tag:blogger.com,1999:blog-1273845167935657872024-03-13T22:49:05.687-04:00A Sweet GraceMothering a child with Type 1 DiabetesUnknownnoreply@blogger.comBlogger360125tag:blogger.com,1999:blog-127384516793565787.post-22439615826621592752020-02-06T18:24:00.002-05:002020-02-06T18:24:22.941-05:00Keystone First denial - I win<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-_Rpe0WIl-QM/XjyfyV3slZI/AAAAAAAACCU/06eCiqSALro2F7Df7p0N2EO-tF8_4aVgACNcBGAsYHQ/s1600/keep-calm-and-admit-i-win.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="700" data-original-width="600" height="320" src="https://1.bp.blogspot.com/-_Rpe0WIl-QM/XjyfyV3slZI/AAAAAAAACCU/06eCiqSALro2F7Df7p0N2EO-tF8_4aVgACNcBGAsYHQ/s320/keep-calm-and-admit-i-win.png" width="274" /></a></div>
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Keystone First health insurance company (Medicaid here in PA) denied Grace her prescription for her Precision Xtra blood ketone test strips. You can read all about the denial in <a href="http://asweetgrace.blogspot.com/2020/01/keystone-first-denial-fighting-back.html" target="_blank">Part 1</a> and <a href="http://asweetgrace.blogspot.com/2020/01/keystone-first-denial-fighting-back_30.html" target="_blank">Part 2</a>. They scheduled a 2:15 pm First Level Grievance hearing, by phone, with me today.<br />
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They called at 1:30 PM.<br />
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<i>'The doctor has reviewed the packet (yes, I sent a PACKET of information!) and has granted the prescription of blood ketone test strips. The prior authorization will be granted and be good for six months. After six months, your endocrinologist will have to submit another prior authorization for the next six months. We do not need to proceed to the First Level Grievance hearing at 2:15 PM.'</i><br />
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So far, Keystone First, it's Penny, 2 and Keystone First, 0.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-127384516793565787.post-25186759878473897102020-01-30T19:12:00.003-05:002020-01-31T06:15:20.950-05:00Keystone First Denial - Fighting Back Part 2<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-4RA7idvu9xY/XjNvLga7stI/AAAAAAAACBg/ra0Ah7Z6q4UEAqax4_5iKR1p2al-N8p-ACNcBGAsYHQ/s1600/Screen%2BShot%2B2020-01-30%2Bat%2B7.04.42%2BPM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="582" data-original-width="389" height="320" src="https://1.bp.blogspot.com/-4RA7idvu9xY/XjNvLga7stI/AAAAAAAACBg/ra0Ah7Z6q4UEAqax4_5iKR1p2al-N8p-ACNcBGAsYHQ/s320/Screen%2BShot%2B2020-01-30%2Bat%2B7.04.42%2BPM.png" width="213" /></a></div>
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You will recall that I have filed a grievance with Keystone First (Pennsylvania Medicaid) for denying Grace her Precision Xtra Blood Ketone test strips. You can read about <a href="https://asweetgrace.blogspot.com/2020/01/keystone-first-denial-fighting-back.html" target="_blank">Part 1 of this process here</a>.<br />
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Keystone First just let me know that we will be proceeding with the First Level Grievance on Thursday, February 6th at 2:15 PM. It will be a phone level grievance and not in person. They will call me, and I will speak to three people from Keystone First:<br />
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<ul>
<li>a doctor of their choosing</li>
<li>a non-elected member of Keystone First (no, I don't know what that means)</li>
<li>an elected member of Keystone First (no, again, I don't know what that means)</li>
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I am to present my case why Grace needs Precision Xtra blood ketone test strips. They will listen. They may ask me questions or clarification. Then, they will make a decision to uphold their denial OR to overturn their denial and grant Grace the ketone test strips.<br />
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We did this in 2016. All of this. I spoke with A Dr. Gail Taylor on the phone, who was not, I repeat, NOT a pediatric endocrinologist. How do I know that? It was the first question I asked Dr. Taylor. She told me she was in internist and a family doctor. I asked if she treated patients with diabetes. 'Sometimes,' she replied. I was incredulous. I was defending my daughter's use of blood ketone strips to a doctor who had no familiarity with diabetes.<br />
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<a href="http://2.bp.blogspot.com/-8BWR7FTkKHo/XjNuZ_-16hI/AAAAAAAACBM/Tw5LOdC-huclt_u8j2-LQ4Kafmg8m9W0QCK4BGAYYCw/s1600/Screen%2BShot%2B2020-01-30%2Bat%2B7.01.36%2BPM.png" imageanchor="1"><img border="0" height="313" src="https://2.bp.blogspot.com/-8BWR7FTkKHo/XjNuZ_-16hI/AAAAAAAACBM/Tw5LOdC-huclt_u8j2-LQ4Kafmg8m9W0QCK4BGAYYCw/s640/Screen%2BShot%2B2020-01-30%2Bat%2B7.01.36%2BPM.png" width="640" /></a><br />
From <a href="https://www.jdrf.org/t1d-resources/about/symptoms/blood-sugar/high/" target="_blank">JDRF</a><br />
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<a href="http://2.bp.blogspot.com/-SkS3lLqLcTw/XjNusIb8NPI/AAAAAAAACBY/FLFEJO6ZfA8HhyOyavbrnC0pvHuYAyy2wCK4BGAYYCw/s1600/Screen%2BShot%2B2020-01-30%2Bat%2B7.02.49%2BPM.png" imageanchor="1"><img border="0" height="168" src="https://2.bp.blogspot.com/-SkS3lLqLcTw/XjNusIb8NPI/AAAAAAAACBY/FLFEJO6ZfA8HhyOyavbrnC0pvHuYAyy2wCK4BGAYYCw/s640/Screen%2BShot%2B2020-01-30%2Bat%2B7.02.49%2BPM.png" width="640" /></a><br />
From <a href="https://beyondtype1.org/ketones/" target="_blank">Beyond Type 1</a><br />
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Defend I did. I came with background information, research and facts. Keystone First had been prescribing blood ketone test strips since 2013 for Grace, with no problem. Now, it was a problem as they changed their formulary. Grace's diabetes and her need for the blood ketone strips did not change.<br />
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So, on February 6th at 2:15 PM, I will do it yet again. Defend her need to check her ketones via blood drop as opposed to urine test strips. If you would like to know why she needs them, here is some <a href="https://beyondtype1.org/ketones/" target="_blank">information from Beyond Type 1 about diabetic ketoacidosis (DKA)</a> that's good to know. Here is some more <a href="https://www.jdrf.org/t1d-resources/about/symptoms/blood-sugar/high/" target="_blank">information about from JDRF</a>.<br />
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It seems in denying Grace the blood ketone test strips, Keystone First is violating their very own policies about providing care, treatment, medicines and therapies that are 'medically necessary.' How do they define 'medically necessary?' Here is what they say in the <a href="https://www.keystonefirstpa.com/pdf/member/handbook/english.pdf" target="_blank">Keystone First 2020 Member Handbook</a>, p. 33:<br />
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<a href="https://1.bp.blogspot.com/-UL3lVN_HzYQ/XjNv7HqtYYI/AAAAAAAACBo/qMFzMjnROgs5GLh_36cqV8RiZ7iQtlEpgCNcBGAsYHQ/s1600/Screen%2BShot%2B2020-01-30%2Bat%2B7.07.56%2BPM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="357" data-original-width="718" height="318" src="https://1.bp.blogspot.com/-UL3lVN_HzYQ/XjNv7HqtYYI/AAAAAAAACBo/qMFzMjnROgs5GLh_36cqV8RiZ7iQtlEpgCNcBGAsYHQ/s640/Screen%2BShot%2B2020-01-30%2Bat%2B7.07.56%2BPM.png" width="640" /></a></div>
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Let's review, shall we?<br />
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Will blood ketone strips prevent an illness or condition?<br />
<span style="color: red;">Yes they will. They will prevent DKA.</span><br />
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Will blood ketone strips reduce the developmental effects of an illness or condition?<br />
<span style="color: red;">Yes they will. They will prevent the development of DKA which can lead to coma, hospitalization and even death.</span><br />
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Will blood ketone strips help Grace to get or keep the ability to perform daily tasks?<br />
<span style="color: red;">Yes they will. If she is able to manage her high blood sugars and know what to do, she can continue on with school and other activities. Not being in DKA means she can continue with her life.</span><br />
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So, Keystone First, let's roll.<br />
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-127384516793565787.post-64789818190751593812020-01-09T18:41:00.001-05:002020-01-09T18:46:51.201-05:00Happy 11th Diaversary Grace!It's been 11 years since Grace was diagnosed. Way back in 2009 she was a little 6 year old. She's now 17, and a Senior, heading to college in the Fall. It's part hard-to-believe and part not-so-hard-to-believe-at-all. Time flew and time stood still.<br />
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Here we are, at the beginning of yet another journey.<br />
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Grace made this for her diaversary, so I will leave it to her to say all that needs to be said.<br />
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<a href="https://1.bp.blogspot.com/-K2lC8rYVriI/Xhe55c7SiiI/AAAAAAAACA8/Vcd4SMCJdmAryFmDjKXFFcqs7QFrY5TzACNcBGAsYHQ/s1600/IMG_8211.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1334" data-original-width="750" height="640" src="https://1.bp.blogspot.com/-K2lC8rYVriI/Xhe55c7SiiI/AAAAAAAACA8/Vcd4SMCJdmAryFmDjKXFFcqs7QFrY5TzACNcBGAsYHQ/s640/IMG_8211.JPG" width="358" /></a></div>
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Love you, Bird.</div>
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<a href="https://asweetgrace.blogspot.com/2019/01/year-10.html" target="_blank">Year 10</a></div>
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<a href="http://asweetgrace.blogspot.com/2018/01/year-9.html" target="_blank">Year 9</a></div>
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<a href="https://asweetgrace.blogspot.com/2017/01/8-years.html" target="_blank">Year 8</a></div>
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<a href="https://asweetgrace.blogspot.com/2016/01/7-years.html" target="_blank">Year 7</a></div>
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<a href="https://asweetgrace.blogspot.com/2015/01/6-years.html" target="_blank">Year 6</a></div>
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<a href="https://asweetgrace.blogspot.com/2014/01/5-years.html" target="_blank">Year 5</a></div>
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<a href="https://asweetgrace.blogspot.com/2013/01/happy-4th-diaversary-grace.html" target="_blank">Year 4</a></div>
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<a href="https://asweetgrace.blogspot.com/2012/01/year-three.html" target="_blank">Year 3</a></div>
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<a href="https://asweetgrace.blogspot.com/2011/01/happy-2nd-diaversary-and-giveaway.html" target="_blank">Year 2</a></div>
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<a href="https://asweetgrace.blogspot.com/2010/01/year-one.html" target="_blank">Year 1</a></div>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-127384516793565787.post-53310765964633210702020-01-07T20:21:00.000-05:002020-01-30T12:41:16.228-05:00Keystone First Denial - Fighting Back Part 1Grace uses <a href="https://abbottstore.com/precision-xtra-blood-ketone-test-strips-10-count-7074565.html" target="_blank">Precision Xtra Blood Ketone strips</a> to check her ketones when her blood sugar is over 250-300 mg/dL. As a 17 year old Type 1 diabetic, with hormones at play 99% of the time, and all that comes with that, there are days when she hits that high once or twice a day. She checks her ketones with the blood ketone strips. They are accurate and guide her decisions for her care and next steps. She keeps a Precision blood ketone meter at home and one in school. She's been using the blood ketone strips since 2013.<br />
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<a href="https://www.keystonefirstpa.com/" target="_blank">Keystone First,</a> her health insurance provider, has denied her prescription from her pediatric endocrinologist for the blood ketone strips. The reason for their denial is:<br />
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<a href="https://1.bp.blogspot.com/-tOA200-SM3I/XhUpME82KII/AAAAAAAAB_4/rHQirMCTsVk6ihD2Tz0kaL3AtparZef9QCNcBGAsYHQ/s1600/Screen%2BShot%2B2020-01-07%2Bat%2B7.57.54%2BPM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="89" data-original-width="872" height="64" src="https://1.bp.blogspot.com/-tOA200-SM3I/XhUpME82KII/AAAAAAAAB_4/rHQirMCTsVk6ihD2Tz0kaL3AtparZef9QCNcBGAsYHQ/s640/Screen%2BShot%2B2020-01-07%2Bat%2B7.57.54%2BPM.png" width="640" /></a></div>
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You read that right. The drug's manufacturer doesn't participate in some drug rebate program, so they will not cover it. There is no medical reason they list. There is no 'not medically necessary' mentioned. There is NO MEDICAL REASON at all. It's sort of shocking, no?! Here is the actual denial letter:</div>
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<a href="https://1.bp.blogspot.com/-Xl7qlxLLrhA/XhUqSXw36RI/AAAAAAAACAI/mSv18KLabxcagJLXQoH7CT_gkWTyAL1dwCNcBGAsYHQ/s1600/KFDenialLetter.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1237" height="640" src="https://1.bp.blogspot.com/-Xl7qlxLLrhA/XhUqSXw36RI/AAAAAAAACAI/mSv18KLabxcagJLXQoH7CT_gkWTyAL1dwCNcBGAsYHQ/s640/KFDenialLetter.jpg" width="494" /></a></div>
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Well, folks, this is not my first rodeo. You see, Keystone First denied her these Precision Xtra blood ketone test strips in March 2016 too. Then they denied as they were 'non-formulary.' I filed a grievance against Keystone First in March 2016 because of that denial. They actually went ahead with a First Level Grievance hearing phone call with me on March 28, 2016. </div>
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I had to speak to a Keystone First doctor of their choosing, and defend why my daughter needed blood ketone strips. This doctor was NOT an endocrinologist. How do I know? I asked the doctor directly. The doctor was lost on words like <a href="https://www.mayoclinic.org/diseases-conditions/diabetic-ketoacidosis/symptoms-causes/syc-20371551" target="_blank">'diabeticketoacidosis (DKA)'</a> and I knew it. During the grievance hearing phone call, Keystone First said they were not necessarily stating she needed to use urine ketone test strips, but they were denying the blood ketone test strips.</div>
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I lost it then. I launched into the folly that is urine ketone testing in 2016. </div>
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<b><i>'What color do you think it is - light purple, medium purple? No, maybe it's light brown. Do you think I'm in danger? Let me urinate again on a strip in a dirty bathroom. Darn, dropped it in the potty. No, it's not a pregnancy test strip."</i> </b></div>
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All those thoughts came out of me at once. It is ludicrous and borders on medical malpractice to suggest that Type 1 diabetics go backwards in their care. I said so. </div>
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The next day in 2016, Keystone First overturned their denial. </div>
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<a href="https://1.bp.blogspot.com/-YWJ5d_BbAXM/XhUvgKO5Q0I/AAAAAAAACAw/sR7jcHnSwbwlX4SVp6Gj9z4HFEbNzA0dACNcBGAsYHQ/s1600/OverturnedMarch2016.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1237" height="640" src="https://1.bp.blogspot.com/-YWJ5d_BbAXM/XhUvgKO5Q0I/AAAAAAAACAw/sR7jcHnSwbwlX4SVp6Gj9z4HFEbNzA0dACNcBGAsYHQ/s640/OverturnedMarch2016.jpg" width="494" /></a></div>
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They approved Precision Xtra blood ketone strips for her with a prior authorization request in 2017 and in 2018. They did not deny the strips. They did not request a hearing with me. They approved them for the two years since. Now, I get a denial letter from the once again. This time, the reason is not even medical, it's because of some rebate program. </div>
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I have filed a grievance against Keystone First once again. In my grievance, I included all of the 2016 grievance paperwork, including my notes from the phone call, my original reasons for grieving the denial and the letter from Keystone First overturning their decision. If they decide they want to go down this road again, I will go down this road again. And I guarantee you, my daughter will not be turning to urine ketone strips and will be approved for Precision Xtra blood ketone test strips.</div>
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I have also contacted the <a href="https://www.phlp.org/en/" target="_blank">Pennsylvania Health Law Project</a> which helps people who are on Medicaid with denials and not getting the treatment, medications and help that they need. </div>
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Game on.</div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-127384516793565787.post-13595625700822132892019-11-20T05:54:00.002-05:002019-11-20T05:55:10.224-05:00World Diabetes Day 2019 by Grace<span style="background-color: white; color: #1c1e21; font-family: inherit; font-size: 14px;">November 14th. World Diabetes Day.</span><br />
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This entire month has been dedicated to raising awareness about Diabetes, but one month truly is not enough time. This disease has no off days. It’s 365 days a year, 24 hours a day, and ALWAYS on your mind. This disease consumes your entire life and every single piece of energy you have. Diabetes is a full time job to keep yourself balanced with good blood sugars, correct insulin coverage, correct carb ratios, correct basals, and MORE. Diabe<span class="text_exposed_show" style="display: inline; font-family: inherit;">tes has taught me an enormous amount of lessons in the long 10 years that I have had it. It has taught me to self advocate and just to accept myself for what I am. The journey to this point though hasn’t necessarily been an easy one. It has been definitely more low points than high points. </span></div>
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<span style="font-family: inherit;">Lately, I’ve been struggling with dealing with everything that comes with it. I often wish I could just be a normal 17 year old. I am so tired of all the checks and alerts and pump changes and just having this disease in general. There are days where I cry and cry about this life I was given. I cry about how my parents have had to deal with all of this (including insurance battles!), while just trying to raise their daughter. I cry about how my friends get to live their lives and never have to worry about if their blood sugar is crashing. I cry about my future with Type 1 and how I will never escape it. I never asked for this to happen to me and I question; Why me?</span></div>
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<span class="text_exposed_show" style="display: inline; font-family: inherit;">However, I always look to the other side. I realize how grateful I am to still be alive and healthy and have the access to things I need to live. I’m also forever grateful for the community I’ve found through this disease. My camp family will forever hold a special place in my heart. They showed me how to live life and not let Diabetes live it for me. Most importantly, they understand and I will always be extremely thankful for them. So, my advice to you on this World Diabetes Day is to educate yourself on this disease and all the things Type 1 Diabetics have to deal with on a day to day basis. To all my fellow diabetics out there, you are so strong and know that there is hope for a day where Diabetes will be in the past. Here’s to hopefully not too many more years living this life with Type 1.</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-127384516793565787.post-37651774025763967682019-08-05T08:54:00.001-04:002019-08-05T08:54:13.162-04:00Diabetes Camp - Year 10!When Grace was 7 years old and went to diabetes camp for the first time, I remember her telling me something on the ride home from camp. "Mom, I want to be a counselor when I grow up!" and I smiled. I was just worried about one more year of camp, and here was Grace, telling me the future.<br />
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<a href="https://1.bp.blogspot.com/-iVM2S3ttzUY/XUgiIdrWJaI/AAAAAAAAB-I/c8at1rxZw_oG0d-VhQov-aL1rQ06En_6QCLcBGAs/s1600/IMG_4504.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-iVM2S3ttzUY/XUgiIdrWJaI/AAAAAAAAB-I/c8at1rxZw_oG0d-VhQov-aL1rQ06En_6QCLcBGAs/s320/IMG_4504.JPG" width="240" /></a><a href="https://1.bp.blogspot.com/-pCpgOyR1td0/XUgiJDc6-4I/AAAAAAAAB-M/-u1bqITwPiEttqtfqQmX2rsrF3bPgl_ZwCLcBGAs/s1600/IMG_4561.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-pCpgOyR1td0/XUgiJDc6-4I/AAAAAAAAB-M/-u1bqITwPiEttqtfqQmX2rsrF3bPgl_ZwCLcBGAs/s320/IMG_4561.JPG" width="320" /></a></div>
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It's all come true. Grace is now a diabetes camp counselor! This year was her 10th year going to camp, and she went through the CIT 1 and the CIT II program last year and the beginning of this year at camp. She completed both and was promoted to Jr. Counselor, with an invitation to interview for a counselor position at next year's camp. I am so very proud of her.<br />
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It was her 17th birthday while she was away at camp. That was bittersweet. I was reassured that she was spending her birthday exactly where she wanted to, at her favorite place to be, among friends. Her fellow counselors decorated her bunk so she woke up to lights and signs for her birthday. It was incredibly sweet.<br />
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Diabetes camp looks different when you are older. There is so much more independence. There is so much more autonomy. There is so much more responsibility. There is so much more caring for others. Grace likes the younger campers more than the older teen campers. She likes to keep busy. She's responsible for helping with 12 am and 3 am blood glucose checks on the campers. She's responsible for helping plan activities and run them.<br />
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Camp looks different for me as her mom too. She's solo on her management. She actually let me follow her on Dexcom while she was away at camp! She texted once or twice about it, but otherwise it was all hers. And I didn't say one thing about it all week. She got through it amongst her people. She managed it all. Was it 'pretty?' I don't really care. I don't. I am done with the illusion that if we just get the right A1C, we have the perfect diabetic and the perfect life. And I am saying it very clearly, this is HER diabetes, NOT MINE.<br />
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Diabetes camp, for Grace, has saved her soul. And I don't say that lightly. She is more herself at camp. She is comfortable, in ways that are not possible even among her close friends at home. She is understood. She is incredibly happy to meet others and share her life. Onward she goes.<br />
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You can visit her past years at diabetes camp here:</div>
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<a href="http://asweetgrace.blogspot.com/2018/07/diabetes-camp-year-8-shes-cit.html" target="_blank">Year 9</a></div>
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<a href="https://asweetgrace.blogspot.com/2017/07/diabetes-camp-year-7.html" target="_blank">Year 8</a></div>
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<a href="https://asweetgrace.blogspot.com/2016/07/diabetes-camp-year-7.html" target="_blank">Year 7</a></div>
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<a href="https://asweetgrace.blogspot.com/2015/08/d-camp-year-6.html" target="_blank">Year 6</a></div>
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<a href="https://asweetgrace.blogspot.com/2014/07/d-camp-year-5.html" target="_blank">Year 5</a></div>
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<a href="https://asweetgrace.blogspot.com/2013/08/d-camp-year-4.html" target="_blank">Year 4</a></div>
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<a href="https://asweetgrace.blogspot.com/2012/08/diabetes-camp-year-3.html" target="_blank">Year 3</a></div>
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<a href="https://asweetgrace.blogspot.com/2011/08/diabetes-camp-year-2.html" target="_blank">Year 2</a></div>
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<a href="https://asweetgrace.blogspot.com/2010/08/diabetes-camp.html" target="_blank">The first year</a></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-127384516793565787.post-3982837727612862962019-01-09T05:51:00.001-05:002019-01-09T05:51:19.067-05:00Year 10Grace was diagnosed with Type 1 diabetes on January 9, 2009. Today marks 10 years.<br />
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I remember thinking about milestones like this when I was in the hospital with her. I thought, what will it be like for her to live 5 years, 10 years, 25 years with diabetes? They were thoughts I entertained as other, more devastating thoughts lurked in the background. It was quite a shock, to find ourselves with a 6 year old with diabetes. It still is sometimes. The memory never quite leaves you of the day.<br />
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It was such a strange thing, to have her diagnosed. The moments themselves are clear in my mind, as if it happened yesterday. The parking outside the ER entrance, getting her out of her carseat, the walk in to the ER, the sheets on her hospital bed, her stuffed elephant she brought with her. I can make it all out in my mind. The hospital is close to us, and it's our go-to hospital for sickness and for visiting loved ones. I could lead a path right where we walked. I feel a rush of it all as I enter the hospital, each and every time.<br />
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Wouldn't it be something for me to have seen where she is now? I didn't know what 10 years with diabetes would do to someone, and do to a family. In some ways, it shattered us and forced us to rebuild. In many ways, it brought our love for Grace to the forefront, in fighting the battles she was at times too young to understand. It has led us to meet people we would not have otherwise met, and have the grandest times. I wish someone would have told me 10 years ago about those parts. I would have loved to hear it.<br />
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Grace is 16 now, and a teenager, and all it entails. She is girl-on-her-own, with a social life that rivals a pop star. She dances competitively on a dance team. She rocks the 11th grade. She has her sights set on college. She manages her diabetes with a pose that I surely would not have had. She gets ticked off with diabetes, and she also rolls with it. I marvel at all the times she packs up her diabetes kit, grabs a juice and a snack, and tells me where she is going and what time she will be back, not mentioning her diabetes once.<br />
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So, to the 6 year old Grace, who I thought was shattered by this diagnosis and would never do the things she wanted to, because it would hold her back, I want to say something.<br />
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You should see her now. She's glorious.<br />
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Happy 10th Diaversary, sweet Grace!<br />
oxo<br />
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<a href="http://asweetgrace.blogspot.com/2018/01/year-9.html" target="_blank">Year 9</a></div>
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<a href="https://asweetgrace.blogspot.com/2017/01/8-years.html" target="_blank">Year 8</a></div>
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<a href="https://asweetgrace.blogspot.com/2016/01/7-years.html" target="_blank">Year 7</a></div>
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<a href="https://asweetgrace.blogspot.com/2015/01/6-years.html" target="_blank">Year 6</a></div>
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<a href="https://asweetgrace.blogspot.com/2014/01/5-years.html" target="_blank">Year 5</a></div>
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<a href="https://asweetgrace.blogspot.com/2013/01/happy-4th-diaversary-grace.html" target="_blank">Year 4</a></div>
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<a href="https://asweetgrace.blogspot.com/2012/01/year-three.html" target="_blank">Year 3</a></div>
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<a href="https://asweetgrace.blogspot.com/2011/01/happy-2nd-diaversary-and-giveaway.html" target="_blank">Year 2</a></div>
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<a href="https://asweetgrace.blogspot.com/2010/01/year-one.html" target="_blank">Year 1</a></div>
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-127384516793565787.post-71053927860387419472019-01-01T12:16:00.001-05:002019-01-01T12:16:37.506-05:002018 Insulin - The CostGrace is 16 now. There is less to write about regarding mothering her with diabetes, mainly because it is HER diabetes, not mine. I do my mothering in the background now, not so much in the forefront. She is a teen and manages on her own, with occasional help from me. The part I do still manage is everything associated with insurance. It's almost a full-time job in and of itself.<br />
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I saved Grace's vials of insulin in 2018. I wanted to see what it looked like for a number of reasons. One, to visualize it and two, to get at the cost of it all. Grace uses <a href="https://www.rapidactinginsulin.com/content/rapidactinginsulin/en/novolog.html/" target="_blank">Novolog</a> in her <a href="https://www.myomnipod.com/home" target="_blank">OmniPod</a> pump, and has Lantus in the refrigerator as a back-up should the pump fail and she needed to do shots. Her prescription is for three vials a month of Novolog and one vial a month of Lantus.<br />
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Grace is not on private health insurance. In Pennsylvania where we live, she was eligible for <a href="http://www.dhs.pa.gov/citizens/healthcaremedicalassistance/index.htm" target="_blank">Medicaid</a>, as she has Type 1 diabetes. When she was diagnosed in 2009, she originally was on our private health insurance, but it was at the time insurers could kick you off if you had a pre-existing condition. When she was diagnosed in January of 2009, my husband's company was switching health insurances, and we had to submit that Grace had Type 1 diabetes. The company was Aetna and they promptly denied her health insurance. The state then picked her up through their <a href="https://www.chipcoverspakids.com/Pages/default.aspx" target="_blank">CHIP</a> (Children's Health Insurance Program). It turns out, children with diabetes are very expensive (!!!) and CHIP removed her in 2011, sending her to the state Medicaid program. She has been on Medicaid since 2011.<br />
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Let me be very honest with you, Medicaid has saved our family from bankruptcy and losing our home. On either of our private health insurance plans, the co-pays for medicines range from $20-$40. Grace currently has nine medications that would qualify. Every month. If we take the midline of the co-pay, that is $270 a month for co-pays alone each month. Doctor visits would be $50, and she sees the endocrinologist four times a year, that's another $200. Medicaid has no co-pays for medicines and no co-pays for doctor visits. She can stay on Medicaid until the age of 19.<br />
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It what I fear she faces after age 19. At this rate, the cost of living with diabetes is unsustainable. It's not only the cost of insulin, it's everything that goes along with it, from pump supplies to glucose tabs, to blood ketone strips to adhesive removers.<br />
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The most concerning, for me as her mom, is the rising cost of insulin. There are some great articles about the cost of insulin and what is happening. Here is one from <a href="https://www.nytimes.com/2018/06/22/well/diabetes-patients-at-risk-from-rising-insulin-prices.html" target="_blank">The New Yorker.</a> Here is one from <a href="https://www.cbsnews.com/news/the-rising-cost-of-insulin-horror-stories-every-day/" target="_blank">CBS News</a>. <a href="http://time.com/money/5394266/insulin-price-increase-rationing/" target="_blank">Time</a>. <a href="https://health.usnews.com/health-care/for-better/articles/2018-06-29/whats-behind-the-rising-costs-of-insulin" target="_blank">U.S. News</a>. <a href="https://www.webmd.com/diabetes/news/20180725/spiking-insulin-costs-put-patients-in-brutal-bind" target="_blank">WebMD</a>. And on and on and on. Do a generic search for 'costs of insulin' and up pops hundreds if not thousands of pieces about it. The costs is literally <a href="https://www.king5.com/article/news/nation-world/moms-story-about-son-who-died-after-rationing-insulin-brings-attention-to-high-insulin-prices/281-552720875" target="_blank">killing people with Type 1 diabetes</a>. <a href="https://www.mprnews.org/story/2018/05/11/soaring-insulin-prices-prompt-protest-at-capitol" target="_blank">Again</a> and <a href="https://www.wbur.org/commonhealth/2018/05/11/insulin-prices-protest" target="_blank">again</a>. It is unacceptable to me and to others.<br />
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Grace used 35 vials of Novolog in 2018. At the '<a href="https://www.drugs.com/price-guide/novolog" target="_blank">market price</a>' of $300 a vial, that is $10,500 worth of insulin if she had to buy it without insurance. Just for insulin to keep herself alive. That's not even paying for needles if she has to inject and not even paying for her insulin pump. That's not even paying for every other supply she needs, just to stay alive.<br />
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There is a movement afoot, and I encourage you to join in. The organization leading it is <a href="https://www.t1international.com/" target="_blank">T1International</a>. They are founded by people with Type 1 diabetes who work for the accessibility and affordability of insulin and diabetes supplies for people around the world. Their hashtag of <a href="https://www.t1international.com/insulin4all/" target="_blank">#insulin4all</a> advocates for affordable insulin for everyone. EVERYONE. Dr. Banting shared his patent for insulin for $1, so that it could be shared with everyone and keep them alive. Before his insulin, people with Type 1 diabetes died.<br />
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I fear we are coming full circle. If you cannot afford insulin, it's the same as not having access to it. What happens when her insulin costs continue to rise and she is not on Medicaid anymore? I'm not sure as a college student she would be able to afford her insulin. She has her family, but shouldn't she be able to access life-sustaining medicine at an affordable cost?<br />
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I urge you to become involved if you love someone with Type 1 diabetes. It truly is a matter of life and death.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-127384516793565787.post-74495465102143287282018-07-23T10:06:00.000-04:002018-07-24T06:53:16.558-04:00Diabetes Camp - Year 9 - She's a CIT!It's July and that can only mean one thing - it's time for diabetes camp! This is Grace's 9th year at camp. Since her very first year of camp when she was 8 years old, she has only ever wanted one thing, to be a Counselor In Training (CIT). She applied in January and went through an interview process and was selected to be a CIT. She was beyond thrilled. Being a CIT means you get to attend TWO weeks of diabetes camp. One week is training at camp, and the next week is putting to use all the skills you've learned at camp.<br />
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And you know what else diabetes camp means? You are together again with your DBFF (Diabetes Best Friend Forever), the indomitable Lily! Lily also applied and was chosen to be a CIT too!<br />
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<tr><td class="tr-caption" style="text-align: center;">The mandatory 'exchanging of gifts' every time they see each other.<br />
It was raining, so we did it in the back of the car!</td></tr>
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And when diabetes camp starts on the day of your 16th birthday, well, that's even better. Why? Because the whole camp gets to sing 'Happy Birthday' to you at dinner time, and your DBFF makes you a 16th birthday crown, which you wear proudly.<br />
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As a CIT you get to do a lot of the 'grunt work' of the camp, as you are learning how to be a counselor. Everyone takes their turn being the lowest gal/guy in the ranks. We have all been there, done that. I told Grace to suck it up and do what is asked of her. She ended up liking all that was asked of her, even serving the campers meals appealed to her after a while. She also got certified in CPR while she was at camp, BONUS! She learned how to set up games and events, talk to campers about BGs, help others learn to carb count and watch counselors run groups and activities.</div>
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<tr><td class="tr-caption" style="text-align: center;">Lily, Emily and Grace (CITs) with Jon and Beca (Counselors)</td></tr>
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As a CIT, you get to help check camper's BGs at 12 am and 3 am. I might have chuckled a little when she told me this on the drive home. She said 'OMG Mom, I am sooooooo tired!' My only comment was '10 years honey, 10 years' and she looked at me and said 'I know, I thought of that!' The night time checks are fewer now, but for years, my time was 2 am. I am still recovering from the sleep deprivation. </div>
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She loved the younger campers. She said they reminded her of herself when she was 8 and 9 years old. She said 'Mom, one girl was just diagnosed 10 months ago, and here she was at a diabetes camp. She told me she LOVES it even more than Girl Scout camp. She said she finally had other friends who had diabetes!' Grace said she welled up. She remembers being that little girl. Not a soul did she know when she went at age 8. I remember dropping her off, thinking <a href="http://asweetgrace.blogspot.com/2010/08/diabetes-camp.html" target="_blank">'What have I just done?'</a> I hope the mom of that young girl knows that she found her tribe here at camp.</div>
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<tr><td class="tr-caption" style="text-align: center;">Photo booth camp fun!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Camp pick up. Tired, grimy and happy.</td></tr>
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Now that she learned all these skills, she goes back for the second week of camp! During the second week of camp, she puts all she learned to use, in a cabin with campers along with a counselor. She is home for a week, getting all things cleaned and getting lots of sleep right now. Then, she is back at a different camp run by <a href="https://setebaidservices.org/" target="_blank">Setebaid Services</a> next week. I literally just wash it all up, then repack with Grace. </div>
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I asked her if she had fun. She said she did. I asked about her friends. She said she was glad to see them. The most telling part was when we arrived at camp and entered through the camp sign.</div>
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'Ahhhhh, I'm home.'</div>
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And here's all you need to know about the friendship of Lily and Grace.</div>
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<a href="http://asweetgrace.blogspot.com/2011/08/diabetes-camp-year-2.html" target="_blank">Camp Year 2</a><br />
<a href="http://asweetgrace.blogspot.com/2012/08/diabetes-camp-year-3.html" target="_blank">Camp Year 3</a><br />
<a href="http://asweetgrace.blogspot.com/2013/08/d-camp-year-4.html" target="_blank">Camp Year 4</a><br />
<a href="http://asweetgrace.blogspot.com/2014/07/d-camp-year-5.html" target="_blank">Camp Year 5</a><br />
<a href="http://asweetgrace.blogspot.com/2015/08/d-camp-year-6.html" target="_blank">Camp Year 6</a><br />
<a href="http://asweetgrace.blogspot.com/2016/07/diabetes-camp-year-7.html" target="_blank">Camp Year 7</a><br />
<a href="https://asweetgrace.blogspot.com/2017/07/diabetes-camp-year-7.html" target="_blank">Camp Year 8</a><br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-127384516793565787.post-58649177039386214622018-03-20T15:50:00.000-04:002018-03-21T14:50:18.092-04:00Sugar Medical Diabetes Bag & Discount Code!You guys and gals out there know I love a good diabetes medical bag! They are hard to find, first of all. Stylish ones are exceptionally hard to find. Getting a bag that fits everything a 15 year old needs, and is willing to carry, even harder. Guess what? Found one!<br />
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I have written before about <a href="http://asweetgrace.blogspot.com/2017/08/macgyvering-diabetes-bag.html" target="_blank">'MacGyvering'</a> medical bags out of makeup kits. A gal has to do what a gal has to do. Sugar Medical contacted me about a month ago and asked if I would be interested in reviewing a diabetes supply bag on my blog. I said sure, and Sugar Medical sent me an OmniPod diabetes supply bag for free to review (full disclosure here, folks). I told them that Grace had a <a href="https://sugarmedical.com/" target="_blank">Sugar Medical</a> bag from about five years ago. They replied that they've updated the OmniPod supply bag to make it even larger and more convenient. I was in.<br />
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This bag, however, needs no MacGyvering at all. It fits everything. It's stylish. It passes the muster of a 15 year old girl (maybe the most important part). It's small to fit into a purse, or it's large enough to carry on your own as a wristlet. The choice is yours.<br />
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<a href="https://sugarmedical.com/diabetes-supply-cases/omnipod-cases/cora-omni-pod-bag.html" target="_blank">Sugar Medical Supply Bag</a><br />
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<a href="http://2.bp.blogspot.com/-V5yW-F-5EEI/Wq2MPz5j7RI/AAAAAAAAB5c/o1HwKhxvmfUsV4kdvQfXr0L6pYMEI5sngCK4BGAYYCw/s1600/thumbnail-5.jpg" imageanchor="1"><img border="0" height="240" src="https://2.bp.blogspot.com/-V5yW-F-5EEI/Wq2MPz5j7RI/AAAAAAAAB5c/o1HwKhxvmfUsV4kdvQfXr0L6pYMEI5sngCK4BGAYYCw/s320/thumbnail-5.jpg" width="320" /></a><br />
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I love the outside of the bag that leaves a place for ID. It can become a small wristlet if Grace likes. This could hold some money too, or a debit card. I always look for a diabetes kit that has some kind of place to hold information. If Grace loses her kit, her name card and contact information could be right there. The pouch is very sturdy and closes with Velcro. Thanks for thinking of how useful this could be, Sugar Medical!</div>
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<a href="http://1.bp.blogspot.com/-z1Fq5ATTLIc/Wq2K5fNgJzI/AAAAAAAAB4o/nIXsXI25IqUfXTDZe27jvTMTcQC_ZbKYgCK4BGAYYCw/s1600/thumbnail.jpg" imageanchor="1"><img border="0" height="240" src="https://1.bp.blogspot.com/-z1Fq5ATTLIc/Wq2K5fNgJzI/AAAAAAAAB4o/nIXsXI25IqUfXTDZe27jvTMTcQC_ZbKYgCK4BGAYYCw/s320/thumbnail.jpg" width="320" /></a></div>
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Grace chose the <a href="https://sugarmedical.com/diabetes-supply-cases/omnipod-cases/cora-omni-pod-bag.html" target="_blank">'Cora' print bag</a>. She's a fan of flowers and prints. She also rocks the OmniPod, and this case is made for it. There are <a href="https://sugarmedical.com/diabetes-supply-cases/omnipod-cases.html" target="_blank">many other prints too for the OmniPod</a>. Sugar Medical also has <a href="https://sugarmedical.com/travel-bags.html" target="_blank">travel bags</a>, <a href="https://sugarmedical.com/insulated-sling-backpack.html" target="_blank">backpacks</a>, <a href="https://sugarmedical.com/diabetes-purses.html" target="_blank">purses</a>, <a href="https://sugarmedical.com/accessories/omni-gel-skins.html" target="_blank">OmniPod gel skins</a>, and <a href="https://sugarmedical.com/accessories/sugarmedical-insulin-cooling-cases.html" target="_blank">insulin cooling cases</a>.<br />
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Let's look at how pretty the Cora bag is...<br />
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Ahhhhhhhhhhh. You would totally carry that too, right?! Right.<br />
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You see that little pouch on the outside of the bag? The one that is discreet? Well, you can slide your diabetes-trash like used test strips into the hole inside the kit, and they end up here, in this pouch! See the oval metal slot there, the one just under the Velcro tabs in the first picture, then clear in the second picture? That's where you slide in the used test strips and they fall through to the pouch. Magical, Sugar Medical, magical!<br />
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Now, for what's inside. The most important thing for Grace is that it holds everything she needs. She likes to have everything handy, in one place. No fishing for this and that in another bag and no separate bags. Everything contained. Sugar Medical bag does!<br />
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<a href="http://2.bp.blogspot.com/-EEk2AImdeAQ/Wq2LHo9I1SI/AAAAAAAAB44/f0lx1yC1d1Mn7t0jW7r4cb4VTKdFC8pnQCK4BGAYYCw/s1600/thumbnail-7.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://2.bp.blogspot.com/-EEk2AImdeAQ/Wq2LHo9I1SI/AAAAAAAAB44/f0lx1yC1d1Mn7t0jW7r4cb4VTKdFC8pnQCK4BGAYYCw/s320/thumbnail-7.jpg" width="320" /></a>Grace has in her supply bag...<br />
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<li>OmniPod PDM</li>
<li>Freestyle test strips</li>
<li>Delica lancing device</li>
<li>Novolog insulin</li>
<li>Extra OmniPod</li>
<li>Glucose tabs</li>
<li>Unisolve wipes</li>
<li>Skintac wipes</li>
<li>Extra Delica lancets</li>
<li>Two needles (just in case)</li>
<li>Alcohol wipes</li>
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It holds everything she needs for a complete Pod change should she need. That's really important to me. She just needs to grab and go. No thinking about packing another Pod, or if she has Unisolve or SkinTac. She reloads her kit as needed. </div>
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This is the great part about the bag - it has the mesh pocket on the right side of the bag that lets you see everything you have. None of this hidden mumbo jumbo where you have to guess what you have. The mesh side bag was able to hold the extra OmniPod, a tube of glucose tabs, two needles, several packs of Unisolve, several packs of SkinTac, several alcohol wipes and a few extra Delica lancets.</div>
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Grace likes the silicone cover (the pink one that's on there now in the picture) on her PDM at all times. If you choose not to have the silicone cover on, Sugar Medical supplies Velcro strips to stick on the back of your PDM, so that the PDM stays secure within the kit. Neat idea!</div>
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Grace has used this bag for the past two weeks. She got compliments on the print and some of her friends noticed she 'switched kits.' It fits great in her backpack at school and fits right into her purse when she is home. </div>
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You know the best part of this review? </div>
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YOU get a discount code for purchasing your own Sugar Medical diabetes supply bag! Sugar Medical was kind enough to provide a code for 15% off your purchase. Just use code <b>ASWEETGRACE15</b> for 15% off your purchase at Sugar Medical. The code expires on 4/21/18.</div>
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<a href="https://sugarmedical.com/" target="_blank"><span style="font-size: large;">Click here to go to Sugar Medical. </span></a></div>
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Thanks Sugar Medical for the OmniPod diabetes supply bag for Grace to review! You make great bags that make having diabetes just a wee bit better and certainly more stylish!</div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-127384516793565787.post-45174119625161052542018-01-29T20:05:00.000-05:002018-01-29T20:05:13.051-05:00Grape Glucose Tabs: A Love StoryThis is a love story, I guarantee you. There are some things that you should know first.<br />
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Grace only uses CVS Grape Glucose Tabs when she has a low blood sugar. It's the only flavor she likes and they are not chalky (yeah CVS!). If you are new to the Type 1 diabetes game, glucose tabs are like quick shots of pure sugar. They raise a person's blood glucose levels quite quickly. Along with Juicy Juice and granola bars, they are Grace's 'go to' when she finds herself having a low blood sugar. Low blood sugars are dangerous. Your body and mine all depend on glucose to run all the cells in our body. Low blood sugars are your cells slowing down, trying to conserve glucose to keep you going. Lows are more dangerous than highs, in my opinion. Lows lead to passing out if you don't give your body some glucose in order to run.<br />
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Grace uses about a bottle and a half a month. Wow, that's a lot you might say. I don't compare her to anyone else, so I wouldn't really know. Is it? Who the hell cares anyway, she uses what she uses. And no, she doesn't experience 'a lot' of lows. Thank you for your advice you are about to give, but no thanks. She's got this.<br />
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This is why she uses a lot of them. She stores them various places in little easy-to-carry tubes.<br />
She has glucose tab tubes:<br />
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<ul>
<li>in her diabetes kit that goes wherever she goes</li>
<li>in her school backpack</li>
<li>in her purse</li>
<li>in her dance bag for dance class</li>
<li>in her dance backpack that she takes to dance class</li>
<li>in the glove compartment of each car</li>
<li>at the nurse's office at school, in her care kit for emergencies</li>
<li>in my purse</li>
<li>two spare tubes on the diabetes shelf in the kitchen, for 'grab and go' needs</li>
<li>in her bedroom next to her bed</li>
<li>there are other hidden places she probably doesn't even tell me</li>
<li>she might have some at a friend's house, I don't even know</li>
<li>there may be some in her coat pocket</li>
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And we reload them from the large tab containers.</div>
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I went to CVS to buy them as she was out. Hmmm I thought, none at our local CVS, that's odd. I'll hit the next CVS down the road. Hmmm, empty shelf there too. Checked yet another CVS. Empty shelf. Little bit of panic set in. No problem, the wonders of the internet, right? CVS.com will have them. Nope, they don't. The tabs don't even appear on their website.</div>
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Noooooooooooooo.</div>
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So I did what any mom would do, I posted on Facebook with a picture of the tabs.<br />
All hands on deck in a time of crisis.</div>
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<a href="https://3.bp.blogspot.com/-UdSS3NZt9Y8/Wm5XTt_TY4I/AAAAAAAAB4E/0VkMrpD-_G8b56qWVhcNo_Q2q7_qb36sACLcBGAs/s1600/Screen%2BShot%2B2018-01-28%2Bat%2B6.07.30%2BPM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="519" data-original-width="511" height="320" src="https://3.bp.blogspot.com/-UdSS3NZt9Y8/Wm5XTt_TY4I/AAAAAAAAB4E/0VkMrpD-_G8b56qWVhcNo_Q2q7_qb36sACLcBGAs/s320/Screen%2BShot%2B2018-01-28%2Bat%2B6.07.30%2BPM.png" width="315" /></a></div>
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And my friends responded, from far and wide. They encountered empty shelves, and texted me pictures of empty shelves, and said they were going to the next CVS to try and find them. They named the stores they had been to, so others would know they didn't have them there. They sent me texts of 'Score!' and 'I got 'em!' Bottles were handed to me as I entered work today, and more were promised tomorrow, bottle are coming in the mail, and bottles are being dropped off at my door.<br />
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<a href="https://3.bp.blogspot.com/-FnsXGkDlyJ4/Wm_EpjiaSQI/AAAAAAAAB4U/OqK7weLv9n8dL4986Ijjauq9FrStYNfuQCLcBGAs/s1600/Glucose%2Btabs%2B.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://3.bp.blogspot.com/-FnsXGkDlyJ4/Wm_EpjiaSQI/AAAAAAAAB4U/OqK7weLv9n8dL4986Ijjauq9FrStYNfuQCLcBGAs/s320/Glucose%2Btabs%2B.jpg" width="320" /></a></div>
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I have bottles of CVS Grape Glucose Tabs from Minnesota, Seattle, Northern NJ, Pennsauken, New York, Collegeville, Lansdale, Center City, Pittsburgh and beyond.<br />
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To my friends who responded to my call to action so splendidly, thank you. You came through in spades. Grace and I are indeed very lucky to call all of you friends. There is a saying that it's the friends you can call up at 3 AM that matter. You are my 3 AM friends.<br />
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Thank you, my village, for making something that at times is so awful, so very wonderful.<br />
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<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-127384516793565787.post-5196669643944246862018-01-09T05:43:00.000-05:002018-01-09T05:43:08.359-05:00Year 9Grace was diagnosed with Type 1 diabetes on January 9, 2009. This year, 2018, makes NINE years of living with Type 1. Nine years is so very close to the big TEN. That reminds me, I have to apply for Grace's <a href="http://www.lillydiabetes.com/lilly-diabetes-journey-awards.aspx" target="_blank">10 year medal from Joslin</a>. Imagine that, ten years. At times, it seems like ten minutes, then there are times that it feels like every minute of those ten years.<br />
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Here are the past years if you care to take a look.<br />
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<a href="https://asweetgrace.blogspot.com/2017/01/8-years.html" target="_blank">Year 8</a><br />
<a href="https://asweetgrace.blogspot.com/2016/01/7-years.html" target="_blank">Year 7</a><br />
<a href="https://asweetgrace.blogspot.com/2015/01/6-years.html" target="_blank">Year 6</a><br />
<a href="https://asweetgrace.blogspot.com/2014/01/5-years.html" target="_blank">Year 5</a><br />
<a href="https://asweetgrace.blogspot.com/2013/01/happy-4th-diaversary-grace.html" target="_blank">Year 4</a><br />
<a href="https://asweetgrace.blogspot.com/2012/01/year-three.html" target="_blank">Year 3</a><br />
<a href="https://asweetgrace.blogspot.com/2011/01/happy-2nd-diaversary-and-giveaway.html" target="_blank">Year 2</a><br />
<a href="https://asweetgrace.blogspot.com/2010/01/year-one.html" target="_blank">Year 1</a><br />
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Grace is pretty much on her own. I am still involved with changing basal rates but everything else is all hers. Carb ratios are hers. There are days, sometimes multiple days, that go by and I don't know a BG. I take a look in her OmniPod PDM and sure enough, all the testing is there. Every single day. She remembers to test before lunch at school. She remembers to test when she walks somewhere after school with a friend to get Starbucks. She remembers when she is at her friend's house at a late night party. She stays up later at night if she is high, checking herself. She writes down on our shopping list to please grab some more juice boxes for her and some granola bars, please.<br />
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I always tell Grace as she leaves for whatever event she is going to - 'Text me if you need help on any foods' - but frankly, she never does. She may relate later that she had a couple slices of pizza and some chips and dosed 50, and sure enough, there she stands later at a prime 106 BG.<br />
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This is a sample text from her about our life right now:<br />
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<a href="https://2.bp.blogspot.com/-UtthlOVIAmg/WlJVMZcUdzI/AAAAAAAAB3Q/iW6FZG41hJU36TyhWGPzAfI642FXY72HACLcBGAs/s1600/Grace%2BD.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1334" data-original-width="750" height="320" src="https://2.bp.blogspot.com/-UtthlOVIAmg/WlJVMZcUdzI/AAAAAAAAB3Q/iW6FZG41hJU36TyhWGPzAfI642FXY72HACLcBGAs/s320/Grace%2BD.jpg" width="179" /></a></div>
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I try not to judge others and their management of their kids and teens, I really do. All I know is that I have learned that this is not MY diabetes. As much as I want to take it from her, I can't. All I can do is promote independence while teaching her what I know. I am not in this to get the perfect A1C. I am not in this to win at who can stay in range the longest and the tightest. I am not in this to prove I can rock a pancake breakfast and see no spike at all. I am not in this to watch her BG 24/7/365.<br />
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I am in this to create a young woman who manages her diabetes and is emotionally healthy and owns it. If I died tomorrow, she would be good to go on her diabetes. She knows what to do and is allowed to do it. It took years to get here. She's going to be 16. Soon she will be done High School and off to college. I'm just backup right now, then soon I will fade away. And this kid's gonna be alright.<br />
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Happy 9th Diaversary, sweet Grace, you are awesome.<br />
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I asked Grace to send me a picture that she would like on this blog post. True to form, she sent me these two.<br />
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<br />Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-127384516793565787.post-83300902195985911152017-11-19T06:48:00.001-05:002017-11-19T06:48:48.170-05:00World Diabetes Day 2017<div style="background-color: white; color: #1d2129; font-family: "SF Optimized", system-ui, -apple-system, system-ui, ".SFNSText-Regular", sans-serif; font-size: 14px; letter-spacing: -0.12px; margin-bottom: 6px;">
World Diabetes Day. Around here, we live that every day. For example, in Kohls dressing room trying on bras on Saturday. Grace bumped her Pod (her insulin pump) and a minute later, it started screeching. It's a high pitch death wail that goes to your brain with the thought of 'CHANGE ME NOW!'</div>
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Grace just looked at me and then covered her Pod with her hand, hoping to quiet it. She said 'They are going to think we are ripping off sensor tags in here!' which I then foun<span class="text_exposed_show" style="display: inline; font-family: inherit;">d funny as hell cause they probably are! Then we set about changing her whole pump site. At least it was a semi-clean place, we have changed pumps in way dirtier environments.</span></div>
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To get the alarming pump to stop squealing, I had to jam a paperclip into a tiny hole in the back of the pump. I managed to kill it, shutting it up. By the time we got done we both were laughing. And that's how we celebrated World Diabetes Day.</div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-127384516793565787.post-24940614560254288762017-08-15T16:56:00.003-04:002017-08-15T16:57:43.283-04:00MacGyvering the Diabetes BagFirst of all, let's start off with '<a href="http://www.urbandictionary.com/define.php?term=macgyvering" target="_blank">MacGyvering</a>,' a term I love. I MacGyver a lot of things in life, but I really love to MacGuver make-up bags into diabetes supply bags.<br />
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<iframe allowfullscreen="" class="giphy-embed" frameborder="0" height="337" src="https://giphy.com/embed/16KdaesKdaAI8" width="480"></iframe><br />
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I look for make-up bags that have zippered compartments. They are a rectangular shape, zip all the way around, and have inserted compartments that often snap in place. I have found them at Sephora, Ulta and most often, Target. I wrote about one on this blog way back in 2011. I titled it '<a href="http://asweetgrace.blogspot.com/2011/07/bag-of-my-dreams.html" target="_blank">Bag of My Dreams</a>' because up until then, Grace was relegated to drab, boring, always always always black diabetes bags. Who wants any of that? Not an 8 year old girl back then and certainly not a 15 year old young woman onow.<br />
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Grace has stylish ways of carrying her supplies when she goes places too. She has the perfectly named <a href="https://www.myabetic.com/collections/shop-all/products/cherise-diabetes-handbag?variant=35807473997" target="_blank">Cherise bag </a>from <a href="https://www.myabetic.com/" target="_blank">Myabetic</a>. It's wonderful. It looks great and the inside holds all that she needs.<br />
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Back to the make-up bag. Here is what I do to convert it to a diabetes bag for Grace.<br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-OawnOp_nDvY/WZNUGUPb9XI/AAAAAAAAB1o/8syjdgE2N68iuKloHN_CPVcoqrT28fm5gCK4BGAYYCw/s1600/IMG_3187.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://2.bp.blogspot.com/-OawnOp_nDvY/WZNUGUPb9XI/AAAAAAAAB1o/8syjdgE2N68iuKloHN_CPVcoqrT28fm5gCK4BGAYYCw/s400/IMG_3187.JPG" width="400" /></a></td></tr>
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I found this <a href="https://www.target.com/p/sophia-joy-tropical-prep-3-piece-beauty-organizer-cosmetic-bag/-/A-51268457#lnk=sametab" target="_blank">Sophia Joy make-up bag at Target</a>, in the make-up section. In fact, they have it online too for $24.99!<br />
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<a href="https://3.bp.blogspot.com/-mETuDoPAk9M/WZNVmpUCDqI/AAAAAAAAB1w/ZeJpi-HQSMAVIaMAUo5yP4xJwIPzoiw0gCLcBGAs/s1600/IMG_3188.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="300" src="https://3.bp.blogspot.com/-mETuDoPAk9M/WZNVmpUCDqI/AAAAAAAAB1w/ZeJpi-HQSMAVIaMAUo5yP4xJwIPzoiw0gCLcBGAs/s400/IMG_3188.JPG" width="400" /></a></div>
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See the two zippered compartments? You will love them for supplies. They hold everything perfectly. They snap in place, so they can easily be taken out too. Grace sometimes put her BG tester and her test strips into the colored zippered compartment and unsnaps it and throws it into her purse, if she is short on time or space for the entire kit. In the colored compartment is where Grace stores her extra <a href="http://www.myomnipod.com/" target="_blank">Pods</a>, <a href="https://www.amazon.com/Uni-Solve-Adhesive-Remover-Wipes/dp/B00M3IKRFU/ref=sr_1_5_a_it?ie=UTF8&qid=1502828217&sr=8-5&keywords=unisolve&th=1" target="_blank">Unisolve</a>, <a class="" href="https://www.amazon.com/Skin-TacTM-Adhesive-Barrier-Wipes-count/dp/B002NSCHY4/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1502828260&sr=1-1&keywords=skintac" target="_blank">SkinTac</a> and <a href="https://www.amazon.com/Smith-Nephew-OpSite-Flexifix-Transparent/dp/B000PQAYZK/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1502828285&sr=1-1&keywords=flexifix" target="_blank">Flexifix</a>.<br />
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<a href="https://1.bp.blogspot.com/-8qHlANJ5Buk/WZNXPmIyqdI/AAAAAAAAB18/TMdzG3D9qYwuu8dfsgxWadz4mBN5ZsORQCLcBGAs/s1600/IMG_3189.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="300" src="https://1.bp.blogspot.com/-8qHlANJ5Buk/WZNXPmIyqdI/AAAAAAAAB18/TMdzG3D9qYwuu8dfsgxWadz4mBN5ZsORQCLcBGAs/s400/IMG_3189.JPG" width="400" /></a></div>
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Here is the back section with the small spaces for make-up brushes. This is what I need to MacGyver in order for Grace's <a href="https://www.myomnipod.com/explore-Omnipod/Omnipod-system/" target="_blank">PDM</a> to fit into this space. The space on the far left perfectly fits a vial of Novolog and the space next to it perfectly fits her BG tester and a vial of test strips. It's the two compartments on the right that I need to make into one larger compartment.<br />
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<a href="https://4.bp.blogspot.com/-KCcHq_CUjj8/WZNcvBGgj_I/AAAAAAAAB2M/iBOs-XacSwUMx1pmw8J9eg5X17N_bb0vACLcBGAs/s1600/IMG_3190.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="400" src="https://4.bp.blogspot.com/-KCcHq_CUjj8/WZNcvBGgj_I/AAAAAAAAB2M/iBOs-XacSwUMx1pmw8J9eg5X17N_bb0vACLcBGAs/s400/IMG_3190.JPG" width="300" /></a></div>
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Get a <a href="https://www.amazon.com/Best-Sellers-Arts-Crafts-Sewing-Seam-Rippers/zgbs/arts-crafts/12899521" target="_blank">seam ripper tool</a> and start. Take out the stitches that separate the last two sections. Just be careful and don't rip the actual fabric of the kit. It takes a few minutes but pretty soon you'll have one large compartment.<br />
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<a href="https://1.bp.blogspot.com/-Hf5QlvbhFXM/WZNdNTnfC1I/AAAAAAAAB2Q/Y-OWU5_vZdUAkXklj39n93rbN7jK8s4JwCLcBGAs/s1600/IMG_3191.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="400" src="https://1.bp.blogspot.com/-Hf5QlvbhFXM/WZNdNTnfC1I/AAAAAAAAB2Q/Y-OWU5_vZdUAkXklj39n93rbN7jK8s4JwCLcBGAs/s400/IMG_3191.JPG" width="300" /></a></div>
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Voila! One large compartment for a PDM.<br />
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<a href="https://1.bp.blogspot.com/-Dh3gU7UGuWw/WZNeMCT7o2I/AAAAAAAAB2Y/wLiE-MLPej0Nau3Bhy4z_nCL4DpDI4mjwCLcBGAs/s1600/IMG_3192.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="300" src="https://1.bp.blogspot.com/-Dh3gU7UGuWw/WZNeMCT7o2I/AAAAAAAAB2Y/wLiE-MLPej0Nau3Bhy4z_nCL4DpDI4mjwCLcBGAs/s400/IMG_3192.jpg" width="400" /></a></div>
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Here it is, full, as she carries it each day. She can survive anything, for days, with this complete kit. In her clear pouch she has needles (in case of pump failure or high BG), Neosporin for cuts, scrapes and sometimes her insertion site which can become irritated, glucose tabs, another BG tester (clicker), and some meds.<br />
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MacGyvered.<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-127384516793565787.post-64661202582206782912017-07-23T12:41:00.001-04:002018-07-23T10:13:05.341-04:00Diabetes Camp - Year 8<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-esKl0tSApso/WXTPdOprCGI/AAAAAAAAB0M/z6t86tBMCEkGrAGQBYrdIWjjH0YG4IdcwCLcBGAs/s1600/IMG_3110.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://4.bp.blogspot.com/-esKl0tSApso/WXTPdOprCGI/AAAAAAAAB0M/z6t86tBMCEkGrAGQBYrdIWjjH0YG4IdcwCLcBGAs/s320/IMG_3110.jpg" width="240" /></a></td></tr>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-aKtCQTt1ME4/WXTPgxmzTAI/AAAAAAAAB0Q/3F-ho46SVvUDNJkEuL4zpMhRd9td78_YACLcBGAs/s1600/IMG_3111.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-aKtCQTt1ME4/WXTPgxmzTAI/AAAAAAAAB0Q/3F-ho46SVvUDNJkEuL4zpMhRd9td78_YACLcBGAs/s320/IMG_3111.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The beautiful road that leads to camp.</td></tr>
</tbody></table>
<br />
<br />
It's July and that only means one thing, well actually two things, in Grace's world. One, her birthday and two, diabetes camp. She just returned from a week away at Camp Setebaid. Of course Lily was there with her, what would camp be without her DBFF (Diabetes BFF)!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-fAQRNIFQ9o4/WXTPr9X7DsI/AAAAAAAAB0U/DogF0umxzD4Fe9GMho_F8DdzOGKMdREbwCLcBGAs/s1600/IMG_3078.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://2.bp.blogspot.com/-fAQRNIFQ9o4/WXTPr9X7DsI/AAAAAAAAB0U/DogF0umxzD4Fe9GMho_F8DdzOGKMdREbwCLcBGAs/s320/IMG_3078.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The annual 'exchanging of the gifts.'</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-ftBmJpg8qJs/WXTP0U6LGEI/AAAAAAAAB0c/Y86s_djo0mANsQCpL-XXJyXTrTQaRkzHACLcBGAs/s1600/IMG_3084.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://4.bp.blogspot.com/-ftBmJpg8qJs/WXTP0U6LGEI/AAAAAAAAB0c/Y86s_djo0mANsQCpL-XXJyXTrTQaRkzHACLcBGAs/s320/IMG_3084.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In front of their cabin, Sproul.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-ZHg-UHe_ScI/WXTP0YQc0JI/AAAAAAAAB0Y/Wwf0Ba6abhMaxGgUzjbYf7Ls2QaYE2GqwCLcBGAs/s1600/IMG_3087.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-ZHg-UHe_ScI/WXTP0YQc0JI/AAAAAAAAB0Y/Wwf0Ba6abhMaxGgUzjbYf7Ls2QaYE2GqwCLcBGAs/s320/IMG_3087.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The annual goofy shot.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-gap2B53-ewY/WXTP0XXrl4I/AAAAAAAAB0g/rCTH-9DuPwMPhyaa7bnV9oge1ow6N0OaQCLcBGAs/s1600/IMG_3088.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://2.bp.blogspot.com/-gap2B53-ewY/WXTP0XXrl4I/AAAAAAAAB0g/rCTH-9DuPwMPhyaa7bnV9oge1ow6N0OaQCLcBGAs/s320/IMG_3088.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The recreation of their first picture together, 7 years ago.</td></tr>
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We did the usual drop off. She handed over all her supplies. I told them she is independent in her care. If they want to know what to do about a high or a low, just ask her. Her doctor was very nice, dutifully wrote down what I told her about carb ratios, temp basals, correction factors and the like. I wished them luck as I always do.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-tkWEHL6_Zj0/WXTQbKnnvUI/AAAAAAAAB00/nF-sX06uG7gyAzvq1lv3MEsliyRnF-TaQCLcBGAs/s1600/IMG_3079.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://3.bp.blogspot.com/-tkWEHL6_Zj0/WXTQbKnnvUI/AAAAAAAAB00/nF-sX06uG7gyAzvq1lv3MEsliyRnF-TaQCLcBGAs/s320/IMG_3079.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Darn right they lug their own stuff to their cabin!</td></tr>
</tbody></table>
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<br />
In her cabin, I helped to make her bed, which of course was right across from Lily's bed, so they could look at each other and chat all night long. No top bunk for Grace this year. I think how wonderful it is to have someone you love so much as a friend that you want to stay awake all night talking to them.<br />
<br />
Fast track to six days later. Pick up day. Grace spots me getting out of the car in the parking lot and runs to me and hugs me. That never changes. I am warmed in my heart that she loves to see me. I've missed this sweet goof. Soon we group hug - Grace, Lily, me and Lily's mom. The gang's all here.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-Xtm9iYW-yUc/WXTQBejWLVI/AAAAAAAAB0k/FRHpXdBsVewET2zrubHxzRIfy5e89ONjQCLcBGAs/s1600/IMG_3120.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-Xtm9iYW-yUc/WXTQBejWLVI/AAAAAAAAB0k/FRHpXdBsVewET2zrubHxzRIfy5e89ONjQCLcBGAs/s320/IMG_3120.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The 'after' camp pick up photo.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-VfVcb0-DxYI/WXTQGMhC6yI/AAAAAAAAB0o/kLbrQWS6lqs9H4F8vDnvhosY08R-g_kXQCLcBGAs/s1600/IMG_3115.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://3.bp.blogspot.com/-VfVcb0-DxYI/WXTQGMhC6yI/AAAAAAAAB0o/kLbrQWS6lqs9H4F8vDnvhosY08R-g_kXQCLcBGAs/s320/IMG_3115.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The response to 'Where's your sites?'</td></tr>
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She is sweaty and dirty and smells a bit. And it's all good.<br />
<br />
'Did you have a good time?'<br />
'Yes, a good week. It was HOT.'<br />
<br />
The end of camp brings a circle of campers and counselors. They make announcements, and they sing their songs. Some are half hearted attempts, but they all sit together in a circle. Pumps everywhere. They all look tired and done with it, but it occurs to no one to not try and sing the songs, even if you mouth the words. They sing one that involves a dance challenge to cabin after cabin, and they stand and dance when their cabin is called. Dutifully, as if it's a Godgiven automatic that one stands when one's cabin is called. This is camp.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/--Nk3ERnA4MA/WXTQL2-1IGI/AAAAAAAAB0s/pAYsghXU0SkaiLnSNuJH76YjK2s9FeiYQCLcBGAs/s1600/IMG_3116.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://4.bp.blogspot.com/--Nk3ERnA4MA/WXTQL2-1IGI/AAAAAAAAB0s/pAYsghXU0SkaiLnSNuJH76YjK2s9FeiYQCLcBGAs/s320/IMG_3116.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Everyone sign along!</td></tr>
</tbody></table>
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<br />
We collect her medical supplies and check out. Grace tells me her doctor in her cabin changed her insulin to carb ratio during the week. It has made Grace upset, as she ran pretty high at times because of the I:C change. Grace tells me she should have spoken up about it. I reassure her they were just doing their best to keep her from going low. She was 1:8 for her carb ratio when I dropped her off and it's been changed to 1:20. I ask her doctor about it when we check out, and she explains why. It's not what I would have done, but they are in charge for the week. I explain another way of dealing with exercise and it's impact on BG, including temp basals. But part of camp is letting them be in charge, correct? Camp is a learning experience for me too.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-1bpRgzAY-Ww/WXTQQ4BwQII/AAAAAAAAB0w/gELZeSv7gtse1WokPt3GY2Dd0FxHrxvTwCLcBGAs/s1600/FullSizeRender.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://1.bp.blogspot.com/-1bpRgzAY-Ww/WXTQQ4BwQII/AAAAAAAAB0w/gELZeSv7gtse1WokPt3GY2Dd0FxHrxvTwCLcBGAs/s320/FullSizeRender.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace's spreadsheet of her BGs at camp.</td></tr>
</tbody></table>
<br />
Her pod is falling off and I suggest we do a quick pod change before we hit the road. A clear table and three minutes, and we are on our way.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-ZpLEY7LCxeI/WXTQsLDgV-I/AAAAAAAAB04/X4S1X9OS-I4x_BYtWbfqQrav0cfFNDGAQCLcBGAs/s1600/IMG_3118.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://4.bp.blogspot.com/-ZpLEY7LCxeI/WXTQsLDgV-I/AAAAAAAAB04/X4S1X9OS-I4x_BYtWbfqQrav0cfFNDGAQCLcBGAs/s320/IMG_3118.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Three minutes, tops.</td></tr>
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<br />
Grace and Lily hug goodbye, for now. Grace hugs friends and counselors and says 'thank you' again and again. Soon, we are pulling out of the lot and picking up our goodbye backpack.<br />
<br />
On the ride home, Grace tells me she already misses camp. Like 'I want to go back to camp right now, Mom' missing. I laugh and she does too. She tells me it's the tired talking.<br />
<br />
I ask what she learned this year at camp.<br />
'I learned I should speak up when someone tries to change my insulin to carb ratio.'<br />
<br />
Diabetes camp, good for learning self-advocacy skills too.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-VBBOmuedMfk/WXTQ0XBUduI/AAAAAAAAB08/KpQxutJj67Ufw7y1o40egJWFMCJrbVhswCLcBGAs/s1600/IMG_3125.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://1.bp.blogspot.com/-VBBOmuedMfk/WXTQ0XBUduI/AAAAAAAAB08/KpQxutJj67Ufw7y1o40egJWFMCJrbVhswCLcBGAs/s320/IMG_3125.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What a great group of gals!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/--29c6iyNSpo/WXTQ0fXBdII/AAAAAAAAB1A/ukHVIyNhihk3EI9c3B4hxPayqWTQhp8FgCLcBGAs/s1600/IMG_3126.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://1.bp.blogspot.com/--29c6iyNSpo/WXTQ0fXBdII/AAAAAAAAB1A/ukHVIyNhihk3EI9c3B4hxPayqWTQhp8FgCLcBGAs/s320/IMG_3126.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Community</td></tr>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-127384516793565787.post-47804520869765347902017-05-21T20:32:00.002-04:002017-05-21T20:32:58.438-04:00DBlog Week: More Than Diabetes<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.bittersweetdiabetes.com/2017/05/diabetes-blog-week.html" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://c1.staticflickr.com/3/2836/33789627381_5da3491eaa_o.gif" /></a></div>
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Yes, I know DBlog Week is over. I'm late to the party with this post. Reason? Life.</div>
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We were asked to write about our lives outside of diabetes. Here goes, folks.</div>
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<b>I hate to cook</b></div>
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Like really, really hate it. And surprise, surprise, I stink at it too. I cannot cook anything. Oh I can do the basics - make some chicken, spaghetti, boil things. That's where my talent ends. And I am totally fine with it. If I never spent one more minute in a kitchen for the rest of my life, it would be alright with me. I really don't even care how pot roast is made, or how to cook fish. Nothing interests me less than cooking or talking about cooking. Don't get me wrong, I love to eat. It's the cooking I despise. But a WIN for me is that I raised three kids who eat very well, thank you. </div>
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<b>I coupon the hell out of everything.</b></div>
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I have a coupon for everything. I love to save money. I have always thought of coupons as free money and who doesn't love that?! I am not one of those crazy coupon ladies who buy 250 jars of mustard because they have coupons. If I do not need it, I do not buy it. But if I have free coupons for things, I get as many as I can and I drive to our local food bank and give them a donation. There's nothing that makes me happy like a good coupon.</div>
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<b>I collect snowglobes.</b></div>
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I have about 300 of them. And I should probably post a picture of them here, right? Alas, as I type this, no photo. I promise to add one at some point. I have collected them since I was a little girl. I have them from all over the world, in all shapes and sizes. And yes, I shake them and watch the snow and glitter fall. I use my snowglobes folks, and people over the house are welcome to shake and touch and admire them all they want. Nothing brings me joy like a snowglobe.</div>
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<b>I run a support group for parents of children and adults with autism in the Philly area.</b></div>
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When my oldest child was diagnosed with autism at age 2 1/2, she was the only child I knew with autism. She is 20 now. I thought there should be support for others on this journey, so I joined with other moms to create a support group, online and in person. We have over 250+ members, have meetings, and talk via a listserv. It's one of my proudest accomplishments. Parents don't feel so alone now.</div>
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There ya go, peeps. Something other than diabetes.</div>
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Now back to our regularly scheduled program.</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-127384516793565787.post-88172921006606937542017-05-18T08:34:00.001-04:002017-05-21T20:20:41.186-04:00DBlog Week: Chronic<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.bittersweetdiabetes.com/2017/05/diabetes-blog-week.html" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://c1.staticflickr.com/3/2836/33789627381_5da3491eaa_o.gif" /></a></div>
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Grace has grown up with diabetes since age 6, </div>
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and is now 14, almost 15. </div>
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There is a sense that this is the way it will be. </div>
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And at times, </div>
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that brings me a feeling of sadness </div>
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that washes over it all. </div>
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There is a hurry to the early days, </div>
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months and years. </div>
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I've felt days of sadness throughout them,</div>
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but the teen years</div>
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bring a different shadow.</div>
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Grace is on her own,</div>
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dealing with her diabetes all day, every day. </div>
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She's independent. </div>
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I am the 'checking in' mom.</div>
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But it's all hers.</div>
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<br /></div>
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As a mom </div>
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you don't think about how </div>
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the chronic component will affect you. </div>
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The chronic wears on me. </div>
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The wearing </div>
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creates the sadness</div>
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that this will not change, </div>
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no matter what I do.</div>
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<br /></div>
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So now we just wait it out. </div>
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We just check</div>
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and bolus</div>
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and basal</div>
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and carb count</div>
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for the rest of her days.</div>
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Yes, bionic pancreas,</div>
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I hear you knocking.</div>
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Still a device.</div>
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Still something to tend.</div>
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Still something to worry about </div>
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as a mom. </div>
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<br /></div>
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We do not talk enough</div>
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about the monotony of it all. </div>
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And the impact of the endless. </div>
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We should. </div>
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We should peek under the cover</div>
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and bring it to the light.</div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-127384516793565787.post-44339363180555129732017-05-17T08:08:00.002-04:002017-05-18T08:22:53.289-04:00DBlog Week: The Empowerment Game<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.bittersweetdiabetes.com/2017/05/diabetes-blog-week.html" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://c1.staticflickr.com/3/2836/33789627381_5da3491eaa_o.gif" /></a></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Let’s not play the Blame Game. That game stinks.</span></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Let’s play the Empowerment Game. Much better.</span></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It’s 2009. Your <a href="http://asweetgrace.blogspot.com/p/diagnosis-story.html" target="_blank">six year old daughter has just been diagnosed with Type 1 diabetes and you are in the ER at a local hospital</a>. It’s almost midnight. You are alone with her and you finally get to the hospital room after a long night in the ER. Your head is swimming with data and doctors and nurses and IVs and OMGs. You finally have a moment to think about it all.</span></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And in walks a nurse and and a D parent. </span></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>‘We have some things for you. Can you talk for a minute?’</i></span><br />
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">‘Yeah, I mean sure. We’re here aren’t we?’</span><br />
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<span style="background-color: transparent; color: black; font-family: inherit; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>‘I want you to meet Jane, she’s a parent of a child with diabetes just like your daughter. In fact, her daughter is 9 now and was diagnosed at age 5. She wanted to come say hello.’</i></span></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>‘Hi. I know it’s really really hard right now. Someone said this to me, and now I am saying it to you. You can do this. And I’ll be here to help, as part of your support team. If you want to talk, great, and if it takes you some time to talk, that’s fine too. Here’s my name, my cell phone number and my email. If you haven’t reached out to me in a few weeks, I’ll reach out to you, ok?’</i></span><br />
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">‘Um, well, sure. You know, this is so overwhelming right now. I don’t even know what to ask. Thanks though.’</span><br />
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<span style="background-color: transparent; color: black; font-family: inherit; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>‘No problem. I’m just a phone call away. And I’ve been in your shoes. You are not alone.’</i></span><br />
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<span style="background-color: transparent; color: black; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b>Rule #1 of the Empowerment Game: No one is in this alone.</b></span></span></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">D parent leaves. </span><br />
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In comes a box.</span></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; vertical-align: baseline; white-space: pre-wrap;"><u>In the box is:</u></span></div>
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<li><span style="font-family: inherit;"><a href="https://www.amazon.com/First-Book-Understanding-Diabetes/dp/B0044KMSNO" style="white-space: pre-wrap;" target="_blank">The Pink Panther Book</a><span style="white-space: pre-wrap;"> (how could I not folks, right?!)</span></span></li>
<li><span style="font-family: inherit;"><a href="https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147/ref=sr_1_1?s=books&ie=UTF8&qid=1495022253&sr=1-1&keywords=think+like+a+pancreas" style="white-space: pre-wrap;" target="_blank">Think Like a Pancreas</a><span style="white-space: pre-wrap;"> by Gary Scheiner</span></span></li>
<li><span style="font-family: inherit;">A sample model of each kind of current pump on the market</span></li>
<li><span style="font-family: inherit;">A sign that says ‘You Can Do This’</span></li>
<li><span style="font-family: inherit;">A diabetes kit that matches your child’s interests and holds all their stuff</span></li>
<li><span style="font-family: inherit;">Samples of: <a href="https://www.amazon.com/UNI-SOLVE-ADHESIVE-REMOV-WIPES-count/dp/B00GHVO9M6/ref=sr_1_1?s=books&ie=UTF8&qid=1495022290&sr=8-1&keywords=unisolve+wipes" style="white-space: pre-wrap;" target="_blank">Unisolve wipes</a><span style="white-space: pre-wrap;">, </span><a href="https://www.amazon.com/Skin-TacTM-Adhesive-Barrier-Wipes-count/dp/B002NSCHY4/ref=sr_1_1_a_it?ie=UTF8&qid=1495022311&sr=8-1&keywords=skin+tac+wipes" style="white-space: pre-wrap;" target="_blank">SkinTac wipes</a><span style="white-space: pre-wrap;">, alcohol wipes, </span><a href="http://www.glucolift.com/" style="white-space: pre-wrap;" target="_blank">glucose tabs</a></span></li>
<li><span style="font-family: inherit;">A <a href="https://www.laurenshope.com/" style="white-space: pre-wrap;" target="_blank">medical ID bracelet</a><span style="white-space: pre-wrap;"> for your child</span></span></li>
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<span style="background-color: transparent; color: black; font-style: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b>Rule #2 of the Empowerment Game: No need to reinvent the wheel, others have tried them and they work, now you.</b></span></span></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And what else is in the box?</span></div>
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<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">A computer. Just for you. And it’s bookmarked to favorite blogs in the DOC. It’s bookmarked with informational websites about diabetes. It’s bookmarked to great DOC community sites.</span><br />
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<span style="background-color: transparent; color: black; font-style: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b>Rule #3 of the Empowerment Game: No one is in this alone (see Rule #1) and there is a huge community of people who get it, who are willing to help.</b></span></span><br />
<span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span>
<span style="background-color: transparent; color: black; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">There's one more thing that awaits you in this game. And it's the best one yet.</span></span><br />
<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Oh look, here they come into your hospital room!</span><br />
<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> </span><br />
<span style="background-color: transparent; color: black; font-family: inherit; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It's a representative from your insurance company.</span><br />
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<span style="background-color: transparent; color: black; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>'I am here to help you make this disease more manageable. I understand this is hard work, for everyone. The last thing you need is to fight insurance companies. I'll be your connection to an efficient, responsible and proactive system of care for your child. I will help you get what you need to keep her healthy and happy. Here's my direct phone number.</i></span><span style="background-color: transparent; color: black; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>'</i></span></span><br />
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<span style="font-family: "arial";"><span style="white-space: pre-wrap;">Wouldn't this all be fantastic? To leave a place where your child was just diagnosed, with a full set of resources, connection, people who get it, and information to help you get on with caring for your child.</span></span></span><br />
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-127384516793565787.post-31188290540489643912017-05-16T06:30:00.000-04:002017-05-17T07:54:32.945-04:00Dblog Week: The Cost of Insulin - I'm looking at YOU, Eli Lilly & Novo Nordisk<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.bittersweetdiabetes.com/2017/05/diabetes-blog-week.html" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://c1.staticflickr.com/3/2836/33789627381_5da3491eaa_o.gif" /></a></div>
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What's your life worth? No, really, what's it worth to you? Are you non-diabetic? Give me a figure. OK, now in a second, I changed your life. You're diabetic. Still worth as much? </div>
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What's a vial of insulin worth? Eli Lilly and Novo Nordisk say it's worth a lot of money. More money than ever before. TONS more. Feel better now? Eli Lilly and Novo Nordisk both increased their insulin price by 7.9% recently. Why, you ask? This is the standard mantra I hear repeated at us in the DOC when we ask: 'It's complicated.'</div>
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You know what's complicated? Brain surgery. Heart valve replacement. Advanced Calculus. Getting a 3 year old to stay in their own bed at night. Those things are hard. Providing and making insulin as a company, don't even talk to me about complicated. It's only complicated because they do not want to admit that they want more profit. Hands down profit, on the backs of people with diabetes. Diabetes is the new black.</div>
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<a href="http://www.businessinsider.com/insulin-prices-increased-in-2017-2017-5" target="_blank">As of May 2, the list price of Humalog, a short-acting insulin, is $274.70 for a 10 ml bottle, an increase of 7.8% from what the list price had been since July 2016. On May 2, Lilly also took a 7.8% list price increase to Humulin, an older form of insulin. Novo Nordisk, which also makes a short-acting insulin, increased its prices to the drug in 2017. In February, the drugmaker raised its price to $275.58 for a 10 ml bottle, up 7.9% from what the list price had been since July 2016. In December, Novo Nordisk committed to limiting all future drug list price increases from the company to single digit percentages. Novo did not immediately return a request for comment.</a></div>
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<a href="http://www.businessinsider.com/insulin-prices-increased-in-2017-2017-5" target="_blank">Over the last decade, the list prices of the two drugs have increased by 290%. </a></div>
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Dear Jesus on a bike. What the actual hell? </div>
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I mean, come on folks, more competition in the marketplace, the price goes down, right? </div>
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Oh, you're diabetic. I forgot. For you, the price goes up. They know we need insulin to live.</div>
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We are 75 years after the patent for insulin expired. Prices should drop, right?</div>
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Oh, ok, they've made improvements to insulin since then. Ok, I will give them that. Faster, longer acting, more stable. But, 75 years???</div>
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Then we have the middleman who needs to get paid, the pharmacy benefits manager. The PBM (which I desperately want to call the PBJ in honor of a peanut butter and jelly sandwich) gets rebates to keep our favorite insulins, or our not-so-favorite insulins, on their preferred formulary list. Yeah, we need more transparency here, insurance companies and PBMs. </div>
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There is so much more. I have read it all. Ad nauseum. Over and over and over. And I am done. I have so many articles and websites and hashtags and blogs in front of me, and they are all angry. People cannot afford insulin. We have people in the DOC rationing insulin. We have calls to alarm for those who need it right now and are you in Philly? Cause I can get it to Philly. Oh no, Iowa, crap, we need some DOC members in Iowa. Since when did the DOC become the black market for insulin? Well, since greed took center stage, Eli Lilly and Novo Nordisk. </div>
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There's a time for playing nice and there's a time for harnessing our power, collectively. We, the people with diabetes, and the caregivers of young folk with diabetes, we hold the purse strings. We cannot live without insulin, but we have power, more than we realize.</div>
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First things first, DOC, - <b>GET OUT OF BED WITH PHARMA.</b></div>
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I mean it. Right now. Get out of the damn bed. I'll wait. Don't accept gifts and flights and hotel rooms and food and parties and invites and groups and meetings and speaking fees and cocktail parties and little events from them. And while you are at it, some members of the DOC, stop telling me I'm 'jealous because I didn't get invited to an event.' Enough with that truckload of crap. What a reducing of a monumental issue because you think I'm offended. You know what offends me? World hunger, injustice, bigotry and unaffordable insulin. I refuse to take it, the crap and the money. </div>
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And if they support your app, give the money back. Crowdsource the app from the DOC. I'll start with $25.00. Be beholden to no one. If we really want it to change, they'll listen when they don't have money in our pockets.</div>
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Write your Congressmen and women. Get the forces that be in our government to investigate price gouging. There are already alerts in the Congressmen and women's ears about this. It's all over the news. Capture it now. Speak to your local reps. Go to your capital. I'm asking for meetings with my two Congressmen and I'm bringing a little pre-teen diabetic with me. Heaven help them.</div>
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Hell, let's have a Diabetic March on Washington. Name the time and place, I'm there.</div>
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Haven't we had enough, folks? Isn't it about time we demand #Insulin4all - affordable and accessible. Then, let's rise.</div>
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Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-127384516793565787.post-32532395629640146482017-05-15T06:22:00.000-04:002017-05-15T20:48:38.644-04:00DBlog Week: Unexpected Normal<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.bittersweetdiabetes.com/2017/05/diabetes-blog-week.html" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://c1.staticflickr.com/3/2836/33789627381_5da3491eaa_o.gif" /></a></div>
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I never expected that this would be normal. I didn't think that one day we would just roll with a 317 BG, like it's no big deal. I didn't think that one day I would not talk about the 39 BG that hit at 3 AM. I thought all of it was everything, all the time. And it was, but now it's not.</div>
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Maybe that makes me a shitty D parent. Maybe it makes me a 'normal' one, I don't know. Maybe it just is what it is. After 8 years of the D, and raising a young girl to a teen, I cannot ride the rollercoaster any more. It takes too much of my soul and my energy. </div>
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I used to stay awake all night, watching the 317 lower, or in some cases, get higher. And I wouldn't go to bed until it was 'within range.' It might take 30 minutes, or it might be hours. It was anyone's call how it would turn out. How it usually turned out was I was exhausted and no good to anyone the next day. Same with a very low BG. I used to stay awake for hours waiting for it to rise, rise rise. I still DO stay awake to see the lows come up, but our lows have adjusted. For Grace, a 40-ish BG warrants me staying up, a 50-ish does not.</div>
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Instead, I know a strong temp basal increase along with a great big truckload of insulin will get my Grace down from the high. And it will happen within 2-3 hours. And I know that a Juicy Juice and a granola bar will raise her BG about 50 in about 30 minutes. And I give her them and I come back in about 2 hours to make sure they worked. I don't sit and wait anymore. </div>
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The 'new normal' is what is unexpected. It crept up on me. There was no big light switch that turned on, or off, for that matter. It was a slow turning to a manageable life with an unmanageable illness.</div>
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Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-127384516793565787.post-61982892815522612902017-05-10T20:44:00.001-04:002017-05-14T20:27:31.306-04:00Diabetes Blog Week Is Coming!<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.bittersweetdiabetes.com/2017/05/diabetes-blog-week.html" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://c1.staticflickr.com/3/2836/33789627381_5da3491eaa_o.gif" /></a></div>
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<br />
Thanks to Karen over at <a href="http://www.bittersweetdiabetes.com/2017/05/diabetes-blog-week.html" target="_blank">Bitter-Sweet Diabetes</a> for the wonderful 8th Annual Diabetes Blog Week each year. This year I'll be writing every day for a week from May 15th - 19th.<br />
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The topics are:<br />
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Monday - Diabetes and the Unexpected<br />
Tuesday - The Cost of a Chronic Illness<br />
Wednesday - The Blame Game<br />
Thursday - Throwback Thursday: What Brings Me Down<br />
Friday - More Than Diabetes<br />
Wildcard - Diabetes Bloopers<br />
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I'm ready to go! See you on Monday!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-127384516793565787.post-31267174534635505362017-01-09T05:00:00.000-05:002017-01-09T06:39:29.967-05:008 years8 years of having Type 1 Diabetes. I remember only the date as a nagging place I repeat. 'January 9th, January 9th, January 9th, why does that ring a bell?' I mumble in my brain. It's not on the calendar as an important date. Can you believe that - IT'S NOT ON THE CALENDAR! I thought it would forever and ever amen be on the calendar when I walked out of the hospital eight years ago. I thought I would never forget the day, and the date. Here we are, eight years later, and I cannot recall why the date is important. Funny how time covers it all up.<br />
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We are in the teen Grace years now. In all it's glory. 9th grade in High School. Rocking the dance competition team, going out with friends, endlessly on the phone, doing homework by herself and getting invited to parties like it's her job. And we do the diabetes stuff. Every day. Sometimes mindlessly. Sometimes mindful. The 28 BG two nights ago, as Grace staggered into our bedroom at 11 PM, announcing that she would like something to eat right NOW, thank you very much. Yeah, that woke me right up. And I sit at her bedside, remind her to look at me, it will be alright. "I know" she says, as she eats granola bars and juice. "Thanks for sitting with me" as I turn out the light a half hour later. "Go to sleep, I will check you in the middle of the night." "Thanks Mom." You betcha, kid.<br />
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Grace talks with her endo about being a teen. She rolls her eyes and gives her opinion. And her endo, bless her heart, sees her through it all. She asks if she smokes and Grace responds "No, I don't and I don't do drugs either." making us both smile snarky smiles. That girl of mine. Her endo gets her. Asks her if she wants to look at her last couple weeks of BGs and Grace responds "Not really, I lived them, I know what they were." I smile on the inside. Damn right you did, girl.<br />
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And as we leave the endo office I remind her that one day she will do all of this herself. She looks at me and says that she knows, and most importantly, she responds with "I know what to do, Mom." I know you do honey, I know you do. Then she says "But you'll help me all the insurance crap, cause I WILL need help with those jerks." I laugh and promise that I will. The other things - bolus, basal, pump changes, temp basals - she knows.<br />
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There are many days when I don't ask her about diabetes at all, and I don't know a single BG. Can you even believe that? It's called independence, and trust. I scan through the PDM on the kitchen counter every few days and see what she did. Damn it, the girl was spot on. Increased this, decreased that, subtracted carbs cause she was on the low side, cut temp basals. I don't ask her about what she did. I ask her how her day was, if she has homework, what so-and-so said in class today, how she's making it through Geometry. When I do ask, I say "How were your numbers today?" and most often she says "I can't remember, so they must have been fine." Exactly, my dear, exactly. Let them fade away.<br />
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I tell her it's her Diaversary on Monday, as it just occurred to me a few days ago. She says "It is? Wow, that went fast!" Yes, it did sweetie, yes it did. Eight years of learning and living and becoming you - strong, resilient, funny and smart. Able to go about your life every day, giving diabetes it's due, but never letting it run your life.<br />
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Happy 8th Diaversary, Grace.<br />
Keep on rocking in the free world (look up Neil Young, you will understand).<br />
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<a href="http://asweetgrace.blogspot.com/2016/01/7-years.html" target="_blank">7 years</a><br />
<a href="http://asweetgrace.blogspot.com/2015/01/6-years.html" target="_blank">6 years</a><br />
<a href="http://asweetgrace.blogspot.com/2014/01/5-years.html" target="_blank">5 years</a><br />
<a href="http://asweetgrace.blogspot.com/2013/01/happy-4th-diaversary-grace.html" target="_blank">4 years</a><br />
<a href="http://asweetgrace.blogspot.com/2012/01/year-three.html" target="_blank">3 years</a><br />
<a href="http://asweetgrace.blogspot.com/2011/01/happy-2nd-diaversary-and-giveaway.html" target="_blank">2 years</a><br />
<a href="http://asweetgrace.blogspot.com/2010/01/year-one.html" target="_blank">Year 1</a>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-127384516793565787.post-13857298119431195802016-11-14T18:50:00.001-05:002016-11-14T18:50:31.721-05:00World Diabetes Day 2016 - T1D Looks Like Me<div class="separator" style="clear: both; text-align: center;">
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-127384516793565787.post-76760680625032938262016-07-25T14:11:00.002-04:002016-07-25T14:11:31.643-04:00Diabetes Camp - Year 7<div class="separator" style="clear: both; text-align: center;">
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7 years of going to diabetes camp. It's Grace's summertime ritual. She looks forward to going all year. Six days of communing with fellow Type 1-ers. Six days of hanging out with her DBFF (Diabetes Best Friend Forever), Lily. These are the days that get her through all the rest of her days. These six days sustain.<br />
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She sees Lily at check-in time and she smiles the biggest smile. She has gifts. She hugs and they fall right into their best-friend-ness. The kind that doesn't have any awkward beginnings. The kind you have with an old friend where you just jump right in. They've spent the last seven summers together. I believe they were best friends from the moment they met, seven years ago. They clicked that first summer and been together ever since. It's magic.<br />
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Grace had a great week - they swam, hiked the long trails at camp, had campfires and s'mores, went to carb counting and nutrition sessions where she says she learned a lot, did arts and crafts together, had scavenger hunts and singalongs. She changed her own Pod (she does anyway) and kept her own logs of what she ate and dosed all week.<br />
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She comes back energized. She comes back OK with diabetes and living her life. She comes back knowing more about what life is like all along the age spectrum. She sees older teens with D and sees what their lives are like - full, rich, involved - and she thinks about what her life will be like.<br />
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Seven years of camp. Worth every minute.<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-127384516793565787.post-1975547826865389712016-07-16T16:08:00.000-04:002016-07-16T16:08:19.465-04:00Happy 14th Grace!14 years old and your Mom is a day late on your birthday post. Par for the course right now. Your life is crazy - you are SO busy - that posting to the blog falls to the last thing on the list.<br />
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14 and you are wonderful.<br />
14 and you possess an attitude.<br />
14 and you are independent. SO independent.<br />
14 and you are starting to come into your own.<br />
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You are an amazing daughter, full of so much life and love.<br />
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We love love love love love you.<br />
Here's to a grand 14th year!<br />
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<br />Unknownnoreply@blogger.com0