tag:blogger.com,1999:blog-18636298045144112362024-03-13T09:12:55.946-04:00Naturally Sweet SistersNaturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.comBlogger707125tag:blogger.com,1999:blog-1863629804514411236.post-21277016719546832382018-07-02T12:00:00.000-04:002018-07-02T12:00:06.303-04:00How Do You Find Your Voice? By Finding Your Joy.<img alt="Image result for advocating" src="https://www.braintumour.ca/Userfiles/Image/Advocacy/Advocay%20Toolkit.jpg" /><br />
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This might come as a surprise to some but advocating didn't come naturally to me. I was taught <i>(or influenced, perhaps) </i>to believe that people of authority - which included policemen, fire fighters, teachers and of course, medical doctors - demanded deep respect. When they spoke, I listened. This fully underscored that it was expected to do whatever it was suggested that I do. Without hesitation.<br />
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Then, one day, I was in a college writing class and suddenly, I had an epiphany; one of my professors had taken a liking to me <i>(although at the time, I felt like it was a disapproval)</i> and challenged my personal narrative. What I discovered was that I didn't just need to regurgitate other's opinions, but instead, could begin to champion my own voice. While it felt completely foreign and subjective in tone, it also felt right. For the first time, I had power to share what I believed to be true using my own moral compass. Right or wrong, I had a belief and it mattered.<br />
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Old habits are hard to break and routinely, while in medical appointments, I would find myself slipping back into a passive patient role and forgetting that I might provide a greater value by focusing on my own personal needs. After all, if I never spoke up, how would anyone know what roadblocks I might be challenged with in terms of employer, insurance, income, and even educational limitations. In my case, I often just went with the flow and tried to work around any personal constraints to take the medication or follow the prescribed doctrine.<br />
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When our youngest presented with symptoms that simply did not make sense of the given medical explanation by our pediatrician, that passivity became dangerous. So much so, that a week in the hospital recovering from DKA, kicked off the ultimate personal change... no longer was I going to accept a response without researching and analyzing alternatives. This wasn't just about me, but it was also about my children.<br />
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I can admit this now, but, I think I became kind of a jerk. I was so far away from collaborative care that it took an obsessive online search to believe anything that was said from anyone. Until finally, I was simply exhausted. I knew that I needed a team and that team needed to be with a group of people that were committed to creating positive change and improving care for my children and for the greater T1D community.<br />
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I also needed to find joy again. Diabetes is hard and this wasn't making it any easier.<br />
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So how did I get there? A few ways.<br />
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1.) Taking time. I needed to grieve. Part of the diagnosis of T1D was recognizing that I felt completely failed by our old medical team. Right or wrong, I also felt guilty in not seeing the signs of T1D and knowing how to respond to them. In order to find my voice, I had to accept that not everything would be in my control, nor was I expected to know how to handle every situation.<br />
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2.) Building a team. After our botched diagnosis, I had to break away from our first pediatrician. In order to do so, I needed to find another that was more in alignment to our family needs. I also needed a pediatrician that was confident enough to work with me and to form a partnership that focused solely on giving the best care and being humble and honest enough to admit that not all of the answers would be perfect. However, we would get there, and we would do it together.<br />
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3.) Having a desire to 'Pay it Forward'. Part of our family's success has been to work to help others. We volunteer, we share ideas, we communicate. That's the biggest piece in finding your voice. I often say that the first dx taught me what I needed to know while the second dx taught me how I want to change it to make it better for everyone. To me and to the girls, there is great joy in taking an awful moment and creating improved care for all. <br />
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This is perhaps the greatest joy life can give.... creating a lasting and meaningful change to give happiness to the world around you. <br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-58112349457662299352018-06-20T16:36:00.003-04:002018-06-20T16:36:45.054-04:00What Does It Feel Like to Have A Child with T1D Away From Home? <img alt="Image result for feather" height="266" src="https://images.unsplash.com/photo-1421944086326-0c7cce744bad?ixlib=rb-0.3.5&ixid=eyJhcHBfaWQiOjEyMDd9&s=c004973bfa0ae193eef86d0c424282c8&w=1000&q=80" width="400" /><br />
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I remember when our youngest was newly diagnosed. At the time, since she was only three years-old, we weren't missing an abundance of sleepovers. In many ways, having no pressure to sleep over at a friend's house was a nice respite of <i>one.more.worry</i> of living with T1D. We just didn't think about it at all and enjoyed the comfort of middle of the night checks through a short walk down our bedroom hallway. <br />
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As the years ticked by, sleeping away from home was still less of a big deal. Through the friends that she made, many opted for play-dates only, in lieu of long sleepovers. Even as our older daughter was diagnosed, sleeping overnight still seemed less important than getting together for fun day-dates. Perhaps it was a sign of the times as social networking<i> (yes, the girls had phones - yep, no regrets!)</i> was easier to stay at home but still communicate with friends.<br />
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Then, one day, fifth grade camp was upon us. By then, we had stumbled through several uncoordinated, messy sleepovers and realized that the reason of not having them, was less about T1D and more about the cranky, irritable little girls that needed recovery sleep after. Taking a plunge, I agreed to chaperone both sessions of the camp and rise above the fray of not just one or two tired girls, but an entire cabin of overly exhausted pre-teens. <br />
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Simultaneously, through the years, our girls grew to handle more and more care. They also fell in love with their T1D Camp Midicha and while it was a struggle to let go for an entire week, I also found it amazing that an entire volunteer platoon came forth to lead not only wee little ones but the older teens. <br />
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Which has brought us to this point... a quiet house. Both girls are happily ensconced at camp for the 9th year. <br />
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And it feels.. right. We now have an <i>almost</i> 17 year-old and 15 year-old. In reflection, I am grateful that we didn't force or push separation any sooner. The girls are both well-adjusted, able to care for themselves independently and have grown into their own pathways towards young adulthood. Letting childhood happen organically, with or without T1D, during ages and stages, has made for a smooth growing cycle. I worry less because, I too, have been given time to teach myself how to navigate their childhood. There has been no hurry, no rush and no keeping up with the Jones'. Instead, the girls have led the way and together, we have allowed them freedoms at the right times.<br />
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The house is quiet. The children are away from home. And as a mom, it is OK.<br />
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Yes, I miss them tremendously, but I know that the foundation has been laid for a successful transition to college and beyond. <br />
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This is what we hoped to accomplish all the way back in 2006. <br />
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I am sure I will cry next spring when that graduation cap is on her curly head. And again, in two more short, fleeting years for our youngest. However, those tears will also be mixed with pride at the accomplishment that we made together in creating a family unit that allowed our girls to pursue their passions, dreams, hopes, accomplishments and independence, all while living with T1D. <br />
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That's what I hope we all feel when we find ourselves faced with a quiet house. <br />
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Well done, parents and kids! Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-34817127855350868762018-06-13T10:38:00.000-04:002018-06-13T10:42:42.079-04:00Diabetes Camp and the Camp Care Package<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;"><i>Repost of good information!!! Still needing ideas for what to pack for your camper? Here is a great way to avoid homesickness for BOTH parents and kids!!!! </i></span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">With one week in between school end and diabetes camp, I am now scrambling to put together two campers packing list. Part of which includes the fun care package. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">First, start with a basic box. You can use shoe boxes or recycle old UPS boxes. I purchased two simple photo boxes from Michael's craft store. Each cost just $3.99. During a sale, the boxes are often as inexpensive as three for $5.00. You can also find coupons for regularly priced items which discount around 40% off online. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">I try to choose colors that are more neutral now. While my girls love pink, they both have recently changed out the look and feel of their bedrooms. When camp is over, the boxes will stay in their rooms and be used to hold school papers, keepsakes and more. Having a nice neutral color is a great way to blend decor.</span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">At the same time that I purchased the boxes, I also picked up a few inexpensive packs of stickers to decorate each box with. One rule of thumb for all items that go to camp is to make sure their is a label with the campers name. Letter stickers work nicely for this. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">As I mentioned above, the boxes will stay in their room. For this reason, I purposely am not going to decorate the label area. When they come home, the girls will make labels to identify the contents. Most likely, the boxes will hold other items after that. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">Next, the fun part... gather up your goodies. This year, I chose items that appeal to older girls. You can easily adapt this to suit your child (boys too!) with whatever items they find to be fun. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">Some ideas include: </span><br />
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<li style="margin: 0px 0px 0.25em; padding: 0px;">Outdoor toys like balls, Frisbees, discs.</li>
<li style="margin: 0px 0px 0.25em; padding: 0px;">Travel games, journals and comic books.</li>
<li style="margin: 0px 0px 0.25em; padding: 0px;">Sunblock, lip balm and hats.</li>
<li style="margin: 0px 0px 0.25em; padding: 0px;">Beach towels, string backpacks.</li>
<li style="margin: 0px 0px 0.25em; padding: 0px;">Tattoos, fingernail stickers, stuffed animals.</li>
<li style="margin: 0px 0px 0.25em; padding: 0px;">Or anything else that you choose!</li>
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;"><span style="color: blue;"><i>Please NOTE: Our camp does prohibit all food items - including gum, anything that looks like or is a weapon, nothing needing the use of matches, and <u>no electronic devices.</u> This is not the time to give your child a cell phone to call home. One of the best "perks" of camp is that your child is able to unplug and enjoy friendships in the wild outdoors. Nothing is better than that. </i></span></span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">While this is fine to send, I generally avoid items that contain scent that may attract mosquitoes. Therefore, no perfume, body spray or lotions. Deodorant and soap for the shower is a MUST! The rest of the cabin will thank you!!! </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">I try to select a few group oriented activities. Should my child have a quiet moment back in the cabin, often, having a small toy to play with a buddy is a great way to ward off home-sickness. The Cahootie catcher is a perfect example. You can also send scrap paper and instructions with how to make these as a group activity too. Directions are on Pinterest. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">Window markers are also fun and easy to clean up when the week is over. Everyone in the cabin can take turns personalizing their cabin space. This is stain-free fun too. No damage to the cabin or the kids. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">Useful items work well too. My youngest had her eyes on beautiful rhinestone studded swim goggles for weeks. Without her knowing, I was able to pick up a pair for herself and for her sister's surprise box. I know this will get used well beyond camp time and while it was a bit of splurge, it is also going to be well loved. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">Other silly and fun items for the group to enjoy include things like glow bracelets, glow necklaces, flower leis, bandannas, face paint or something like this hot pink temporary hair spray. This can be used by all of the girls and will wash out in the lake at swimming time or in the showers before bed. More fun for all. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">I also include postcards which are pre-addressed and stamped for mailing to home. To make it even more fun, I added a silly crayola scented pen. We also had some leftover party favors that included mini note-pads, perfect for playing tic-tac-toe or writing notes between bunk beds and also, two more pens to share with cabin mates. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">Nothing fancy or expensive, but a deck of cards is the ultimate camp toy. The kids will play all sorts of games such as go fish, spoons, war, etc.. Everyone can join in on the fun too. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">At night, it is also nice to have a quiet toy. This works for my youngest daughter especially. She will smoosh and toss this little guy in her bed until she is ready for sleep. It also works to have something to hold onto for site changes on her insulin pump. Although at camp, she tends to be more brave and confident in her care. It is camp magic! </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">I do tuck in a love note from home and a few other goodies like nail polish and magazines. A good book is also a favorite. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">Here is the completed box. Next, I will wrap this up in plain brown paper and address to my daughter's name and cabin. A special tip is that if you are going to the camp, you can drop this off at the office and avoid any postal fees. Just be sure to add the day that you want it delivered. I tend to ask for Tuesday as it seems like a great time in the middle of the camp experience (Sunday is drop off day for us) and I want the girls to be able to have time to use the items that I packed. </span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">Here is the finished product. Just six more days until camp. Now, to get busy on packing!</span><br />
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<span style="background-color: white; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 16px; font-weight: 700;">Happy diabetes camp week! </span>Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-20409605374122038512018-06-13T10:13:00.000-04:002018-06-13T10:13:07.798-04:00Finals Week and Blood Glucose MonitoringWe all know that stress exacerbates hormones levels, which in turn, increases blood glucose. Usually this is a temporary issue and often, as soon as the person is removed from the stressful situation, the blood sugar drops back in a typical range for that individual. <br />
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But what do you do if you are faced with days of acute stress? <br />
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If you live with T1D and are a student managing final exams, you find creative ways to cope. <br />
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Because we are currently in the middle of this situation, my stress is ramped up enough that all I can muster is a top ten list of what is working (or working as well as can be said) for both of our girls. <br />
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<i>And yes, it is mid-June. Why are we still in school????? </i><br />
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<b><span style="font-size: large;">10. <span style="color: blue;">Take breaks. </span>Write this in BOLD LETTERS on your family message board. It will serve well for the entire week.</span></b><br />
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<b><span style="font-size: large;">9. <span style="color: red;">Hit something. </span> In our house, we head to the driving range for a bucket of balls. If you have a baseball player, use the batting cage. Karate kids, head to the dojo. Soccer enthusiasts, go kick.</span></b><br />
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<b><span style="font-size: large;">8.<span style="color: lime;"> Eat meals</span><span style="color: #134f5c;">.</span> While it may be tempting to no longer make dinner, this helps no one. Continue with meals that are a good combination of carbs, protein and fat to help reduce blood sugar spikes. Plus, meals force a much needed break.</span></b><br />
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<b><span style="font-size: large;">7. <span style="color: magenta;">Be honest</span>. Acknowledge that this is a hard time for students. Empathy reduces stress. </span></b><br />
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<b><span style="font-size: large;">6. <span style="color: orange;">Share. </span> It may have been a pretty easy year for diabetes and some teachers may have forgotten that your child is managing not only exams but a chronic illness. If blood sugars are out of range and testing is not possible, let your child's teacher know ahead of time. Sometimes, a simple solution can be found with testing at a different time of day. </span></b><br />
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<b><span style="font-size: large;">5. <span style="color: red;"> Run. </span> Along the lines of #9, running is the fastest way to tire out our muscle groups. When anxiety and stress are peaking, taking a quick run will often reduce symptoms and return BG back to a typical range faster than any other method. </span></b><br />
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<b><span style="font-size: large;">4. <span style="color: blue;">Write it out.</span> When your child feels overwhelmed with the demands, have them write out a schedule of what needs to be studied and when tests will occur. Seeing it on paper, often reduces the feeling of being out of control. </span></b><br />
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<b><span style="font-size: large;">3. <span style="color: purple;">Study together.</span> Whether your child studies with friends, siblings or parents, having a human connection along with the material, helps through understanding that they are not alone in the sea of exams. </span></b><br />
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<b><span style="font-size: large;">2. <span style="color: lime;">De-emphasize grades.</span> One sure fire way to reduce stress is through communicating that the goal is NOT a grade but instead, mastery of concept. If a student knows the material, they will naturally do better and as a result, the grade will become a fringe benefit. </span></b><br />
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<b><span style="font-size: large;">1.<span style="color: blue;"> Exams end. </span> This time will not last forever. Exams start and finish. And with final exams, comes along the knowledge that summer vacation is right around the corner. </span></b><br />
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<b><span style="font-size: large;">Enjoy your summer!!!! </span></b><br />
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<b><span style="font-size: large;"><br /></span></b>Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-6022119530323583152018-05-24T13:52:00.001-04:002018-05-24T13:52:10.259-04:00The RoadMap Project <img alt="Home" src="https://www.abp.org/sites/abp/files/abp_seal_clean.png" /><img alt="The Roadmap Project" src="https://www.abp.org/sites/abp/files/images/abpf-roadmap-logo-300w.png" /><br />
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Today, I have the pleasure of sharing a very heart-felt collaborative initiative called The <a href="https://www.abp.org/foundation/behavioral-mental-health">RoadMap</a> Project. <br />
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The <a href="https://www.abp.org/foundation/roadmap">RoadMap</a>, a tool for creating meaningful dialogue and offering helpful resources for mental health wellness, was lovingly created in partnership with the American Board of Pediatrics Foundation and a team of many wonderful parent/family advocates and medical providers. I was lucky enough to be on this team and see first hand, the caring and commitment that was brought forth.<br />
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To meet a few of our passionate stakeholders, please watch this video. While it was filmed, there was not a dry eye in the house, but there was something even greater... HOPE. By creating a RoadMap, we hope to create a generation of patient-centered care that balances all facets of health. This launch is only the beginning of even more to come.<br />
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As a patient/parent advisor, my role over the years has been to support my children in all of their well care. This means not only our pediatric endocrinology appointments, but also, to ensure that they have learned the skills and have the resources to keep mind, body and soul healthy and well. I often say that it takes a village to raise a child, but even more so under the demand of chronic care. Having a Roadmap will help to ensure that all of our families receive the care that they need. <br />
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I can't be more proud of this project! <br />
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Please take a moment to visit <a href="https://www.abp.org/foundation/roadmap">our RoadMap website</a> and to share with friends and family. We also encourage you to share<a href="https://www.abp.org/foundation/roadmap"> this link</a> with your own medical providers to help them begin the conversation to ensure that you are getting the best healthcare available. <br />
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You may also cut and paste to share: https://www.abp.org/foundation/roadmap<br />
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Let's keep the conversation going. <br />
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Hugs -<br />
The Naturally Sweet Sisters!<br />
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#RoadMap #NaturallySweetSisters #ABP #Foundation #MentalHealth #Wellness #Pediatrics<br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-8552232086731045902018-05-07T10:10:00.000-04:002018-05-07T10:10:16.891-04:00A Shareable Post: Fantasy Vs. Reality I spend quite a bit of time talking to families and sharing experiences, insight and learning towards caring for our loved ones living with T1D. To me, this is a silver lining of our own dx, as our #Diabetes community is truly one of the kindest, most talented and definitely, the coolest group of people that I have ever been blessed to know.<br />
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However, if there is one common thread to much of the discussion, it is the difficulty in educating our caring friends and family - <i>the ones without T1D in the home</i> - about the many invisible and often, complicated and frustrating facets of daily life with T1D.<br />
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Let me dive right in and say that we, as families with T1D in our homes, are in complete agreement. <br />
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T1D is difficult to understand, to manage and to live with. <br />
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<u><b>First, a quick overview of T1D: </b></u><br />
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<ul>
<li>When people are dx with T1D, the pancreas does not make enough insulin. This makes it impossible to get the blood sugar into the body's cells to be used for energy. Without insulin, the blood sugar will continue to rise to a dangerously high level. This is called hyperglycemia.</li>
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<li>When sugar rises too greatly, water will be pulled from the body in an effort to reduce the increased blood sugar. Without insulin, this can result in dehydration leading to Diabetic Keto-Acidosis (DKA), a life-threatening condition. </li>
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<li>Conversely, if there is an over production of insulin (or too much injected insulin), the blood sugars may rapidly fall to a life-threatening level. Without sugar or a releasing of the insulin stores within the liver through an injection of glucagon, a person with feel sick, possible have seizures or if left unchecked, may die. This is called hypoglycemia. </li>
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<li>Thus, there is a wide range of care needs for patients and caregivers to stay above their hypoglycemia threshold and below their hyperglycemia peak. This is the "In-Range" area that is extremely difficult to manage. With a working pancreas, it is no big deal. You may feel hungry and simply eat. Or you may feel thirsty and have a drink of water. The risk of having hyperglycemia or hypoglycemia is diminished to a statistical non relevance and you can simply enjoy your day. </li>
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This is not the case for families with T1D. As a family with T1D, we must accept that there is no perfect. Within T1D, there are many factors that figure into the ongoing mathematical equation that floats through the existence of every single day. In short, we calculate a prediction based on our known factors and then, inject the appropriate amount of insulin.<br />
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To understand the factors that influence blood sugars (in both directions), here is a list. <br />
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<u>Food:</u><br />
Anything with carbohydrates.<br />
Anything with fat.<br />
Anything with protein. <br />
Water.<br />
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<u>Exercise:</u><br />
Anything that you do aerobically.<br />
Anything that you do sedentary.<br />
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<u>Emotions:</u><br />
Anything that makes you happy.<br />
Anything that makes you stressed.<br />
Anything that makes you mad.<br />
Anything that makes you sad.<br />
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<u>Other:</u><br />
Growth.<br />
Sickness.<br />
Minor Surgeries.<br />
Major Surgeries.<br />
Menstruation.<br />
Sexual Activity.<br />
Pregnancy.<br />
Broken Bones.<br />
Dentistry Needs.<br />
Other autoimmune dx.<br />
Any kind of hormone fluctuation.<br />
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Understanding this list, one can then begin to acknowledge that there is simply no perfect. While a family living with T1D can understand the tangible factors such as food and water, it is scientifically impossible to know the effect of activity, hormones or illness. <br />
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To complicate matters even further, it is important to clarify that every single person living with T1D is unique to their own care needs and to how their body will react to any situation. Age and stage of T1D care, is also another large factor that changes the way T1D will be for each person dx.<br />
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The most frustrating and oft medical literature saying is "This is an Art, not a Science". <br />
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Which is also equally important to be reminded of because the reality is that science has not yet discovered the reasons for the pancreas' beta cell demise. There are theories but no scientific proof of why this occurs, how to stop the auto-immune response or my most hopeful, how to reverse the damage and bring about a cure.<br />
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Until there is better science, families rely on their own knowledge of T1D, the support of their medical providers and the rudimentary tools that require heavy user intervention such as a syringe, a pen, an insulin pump and even calibrating a Continuous Glucose Monitor. None of these devices work without human intelligence and while that may be a negative factor towards blood sugar management, it is also another safe-guard as medical devices can not predict or understand fully of the impact that a day of swimming, playing and a barbecue might have on a child. Without our human intuition and 'SUPER WILD ASS GUESS' (SWAG), we may have more hospitalizations or worse.<br />
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Ultimately, as a friend or family member not living in the home of a person dx with T1D, this is YOUR ONLY ROLE:<br />
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Love your person living with T1D.</div>
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That means, not to judge, not to tell them they are wrong, or bad, or that you could do it better. Not to insinuate that there will be complications or that they deserved it or that karma is at play. Not to scold, not to punish, not to belittle. Not to pass along natural cures or miracle foods. Not to share sad stories or to say it could be worse. Not to undermine or second guess decisions. <br />
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<b><u>If you are blessed to be a part of their world, than the best thing you can to do is to be there with a hug, maybe a few pieces of candy (if they need it) and to see them for exactly who they are - your friend or family member. <i> </i></u></b><br />
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<i>(feel free to leave off the living with diabetes).</i><br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-85229898385383514952018-05-01T14:11:00.000-04:002018-05-01T14:11:30.718-04:00Do You Know How to Use Mini-Glucagon? <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;"><img src="https://s3.amazonaws.com/myglu-content-production/secure-wp-content-glu/uploads/2018/04/30110046/Glucagon_Preparation_Procedure_2-300x181.jpg" style="margin-left: auto; margin-right: auto;" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Visit Myglu.org</td></tr>
</tbody></table>
I wrote this as patient advocate for the <a href="https://myglu.org/articles/we-used-mini-doses-of-glucagon-because-of-a-stomach-virus">T1D Exchange</a> as sometimes, even in this modern world of information exchange, useful #T1D tools are not shared. My hope is that this encourages the dialogue between provider and patient in order to understand all of the available care possibilities for 'Sick Day' guidelines. <br />
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Click <a href="https://myglu.org/articles/we-used-mini-doses-of-glucagon-because-of-a-stomach-virus">HERE </a>to read all about Mini-Glucagon in real life or copy and paste this link: <br />
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https://myglu.org/articles/we-used-mini-doses-of-glucagon-because-of-a-stomach-virus<br />
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Best of all, learn how we stayed hospital free since dx. I do think having tools has helped!<br />
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Hugs!!<br />
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NaturallySweetSistersNaturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-60813233131155370082018-04-30T14:35:00.000-04:002018-04-30T14:35:01.905-04:00Prom Dresses and Insulin Pumps - They DO go together<img alt="Image result for prom clipart 2018" src="https://media.istockphoto.com/vectors/love-vector-id165076618?k=6&m=165076618&s=612x612&w=0&h=UzoGjutTty78l6PS9L1qR5qebBuL6Zs3RP9PNc37eaI=" /><br />
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Tubed, patch, and MDI, are all choices within #T1D world. While there may be strong opinions about what works best but the truth of the matter is #YDMMV <i>(Your Diabetes Mileage May Vary - as my good pal, Bennet @BadShoe often says).</i> This means that whatever you choose, for that moment, is what works best!<br />
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However, that doesn't take away the honest concern of how those special days will be for our loved ones living with T1d. <br />
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<i>Will wearing an insulin pump detract from their moment?</i><br />
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<i>Will there be room to carry supplies?</i><br />
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<i>Will it be limiting to choose specific styles?</i><br />
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<i>And for the love of all things fashion.... what if there are no pockets??????</i><br />
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This past weekend marked our very first prom. And I can share that no, her insulin pump did not detract from her dress, there was plenty of room for supplies - AND low blood sugar foods, not to mention that she wore the perfect dress and it definitely did not have pockets.<br />
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Best of all... none of those questions or answers, overshadowed the beautiful evening. <br />
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More importantly, she danced, she laughed and she made memories for a lifetime. Prom was exactly the way it should be as a milestone of high school for teenagers. <br />
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So how did we do it? Here are a few random tips for ensuring prom is perfect. <br />
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1.) Dress shop for the dress that you and your teen like best. Try not to think about T1D but instead focus on the moment at hand and enjoying the anticipation and excitement of the big night.<br />
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2.) While you are out shopping, stop by your favorite athletic store (we chose Nike) to select a pair of fitted, spandex volleyball or yoga style shorts. We tend to wear these types of shorts under almost all of our skirts and dresses anyway. It is more comfortable and allows a bit more freedom against accidental fashion faux pas. The added bonus to wearing these is that the pump fits securely in the front or side of the shorts. Just clip inward towards your body and the pump virtually disappears as the spandex material smoothly covers it.<br />
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3.) Speaking of shopping, this is a great time to grab a clutch. Look for something sparkly to match the style of the dress but also, check out the size of the bag. We have been known to remove blood sugar meter supplies from the usual case to loosely place inside of the formal wear clutch. This saves room and allows for low bg items to be added, all while still looking fashionable and trendy. Not to mention, that it is important for carrying a driver's license, debit card and a small amount of emergency cash. Oh and lipstick. You know, the important things! <br />
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4.) On the last site change prior to the dance, placement is everything. We try to rotate to flank, tummy or buttock. Placement will depend on the fabric of the dress and usually by then, we have an idea of how sheer, thick or beaded the covered area will be. It also helps to keep these site locations in mind as we know the length of the tubing and the intended location of shorts. If you are using Omni-Pod, this isn't a concern, but it is helpful to remember infusion site rotation. <br />
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5.) If you have a friend with extra pocket space, it is also a good idea to share low treats. Often, our daughters tag friends wearing sports coats and ask if they could hold a roll of glucose tabs. They have great buddies and to this day, everyone has been very agreeable. It has come in handy when on the dance floor. A couple of glucose tabs and lows immediately avoided. <br />
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Most of all, I hope you enjoy the night. This is a special time for everyone and it is nice to see T1d taking a back seat. I just wish all events could involve glittery dress up! <br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-92052583025054706592018-04-19T09:10:00.000-04:002018-04-19T09:26:25.531-04:00NEW for 2018! Diabetemoji by HealthDesignBY.us<h2 style="text-align: center;">
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<img alt="BG-All-Over-the-Place.gif" src="https://static1.squarespace.com/static/53e3bacbe4b022bcdbe1f538/t/59b027551abeab374202f18f/1504716641400/BG-All-Over-the-Place.gif?format=300w" /></h2>
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<b><span style="color: #0b5394;"><br /></span></b></h2>
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<b><span style="color: #0b5394;">If sharing is caring, than we have an app to make your pancreas happy! </span></b></h2>
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<a href="https://www.healthdesignby.us/diabetemoji">Check it out!!!</a></div>
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<img alt="Pump-Problems.gif" src="https://static1.squarespace.com/static/53e3bacbe4b022bcdbe1f538/t/59b0272fc027d8fc8f92e16a/1504716596266/Pump-Problems.gif?format=300w" /></div>
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New for 2018 - The Diabetemoji App is available starting TODAY! </h2>
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<a href="https://www.healthdesignby.us/diabetemoji">https://www.healthdesignby.us/diabetemoji</a></div>
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Updated with FRESH designs, BRIGHT colors, COOL Diabetemojis! Everyone will love sharing a 1000 words in just ONE PICTURE!!!<br />
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<b>Save money!</b><br />
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<b>Save having to repeat annoying diabetes commentary! <i> -- This is a personal favorite of the Naturally Sweet Sisters!!! </i></b><br />
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<img alt="anarebe_iPhone7PlusPSD.jpg" src="https://static1.squarespace.com/static/53e3bacbe4b022bcdbe1f538/t/599c879fcd39c3a52a2ccaff/1504716958743/anarebe_iPhone7PlusPSD.jpg?format=500w" /><br />
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And the best news? It is NEW!!!<br />
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Download today! https://www.healthdesignby.us/diabetemoji<br />
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We hope you love this new edition! Stop by and share your feedback @natsweetsisters on Twitter, or NaturallySweetSisters on Facebook. Your comments help us make this the best diabetes app out there. We are so grateful!<br />
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Thank you!!!<br />
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#diabetes<br />
#emoticons<br />
#diabetemoticons<br />
#diabetemoji<br />
#thisisdiabetes<br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-58626604497341933642018-04-17T18:20:00.000-04:002018-04-17T18:20:15.800-04:00Crashing Low - A Teen Perspective<div class="separator" style="clear: both; text-align: center;">
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I recently read a blog account of what a low blood sugar felt like for an <a href="http://sixuntilme.com/wp/2018/04/10/i-cant-feel-my-face/">adult friend of mine</a> living with T1D. I won't pretend that it didn't bother me, because it did. It's a sad reality of what our loved ones deal with. It also reminded me that it had been a while since I asked the girls how they really felt. If I want to practice sharing empathy and compassion throughout our medical community, then, sometimes, I have to ask the hard questions, even when the answers break my heart.</b><div>
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<b>As we veterans know, parenting with or without T1D is never easy. </b><div>
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<b>So I sat down with my youngest daughter and I asked her to tell me exactly how she felt during a low blood sugar. These are her words without edit. </b></div>
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<span style="color: red;">I don't always notice the low until later. </span></div>
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<span style="color: red;">First, I feel sweaty. I feel my chest warming and at the same time, begin to feel tired.</span></div>
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<span style="color: red;">I can't hear as well and there is a blurry sound.</span></div>
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<span style="color: red;">I can think but everything is distracting. It's hard to concentrate. My thoughts feel interrupted.</span></div>
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<span style="color: red;">I feel really weak.</span></div>
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<span style="color: red;">Sometimes, I feel cold and sweaty. Sometimes, I feel hot and sweaty. </span></div>
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<span style="color: red;">My body feels lumpy and it's hard to make my muscles work.</span></div>
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<span style="color: red;">I know that I need to eat. I hate that I need to eat. It feels like I just came off a roller coaster and my stomach doesn't always want to cooperate. I feel desperate.</span></div>
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<span style="color: red;">I think I look fine to other people but on the inside, I feel like my body is destroying itself. </span></div>
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<span style="color: red;">If it is really low, I feel panic. I hear ringing and buzzing in my brain. </span></div>
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<span style="color: red;">It takes me as long as it took me to drop to feel back up. Sometimes it is minutes and sometimes, I do not feel good for an hour. </span></div>
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<span style="color: red;">I feel depleted after. Sometimes, I just want to sleep until my body feels good again. </span></div>
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<b>I asked her how she felt to have me there and this is what she said.</b></div>
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<span style="color: red;">I feel safer with you. </span></div>
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<span style="color: red;">Sometimes, I feel angry because I want to sleep. I think about that later and I know that you are keeping me safe. </span></div>
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<span style="color: red;">I dislike that you stare at me. I don't like that anyone stares at me when I am coming up. I feel weak and.....<i> (I inserted 'vulnerable' and she agreed). </i></span></div>
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<span style="color: red;">I don't like that you give me too much food. It's awful to have to eat and I never feel that good. I know why you do it but I don't like it. </span></div>
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<span style="color: red;">I am always grateful that you are there, even if I seem not to be. It can be scary. </span></div>
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<span style="color: red;">#ThisisDiabetes</span></div>
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<span style="color: red;">#CureT1D</span></div>
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Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-73706128929142273472018-04-12T11:17:00.002-04:002018-04-12T11:17:39.332-04:00Things I Want You To Know About Living With Type 1 DiabetesMy best ideas often come from places where I am completely shrouded in silence... like that alone time in the car or during my morning shower. As I zone out the rest of the world <i>(not entirely while driving - don't worry, you are safe with me on the road)</i>, I contemplate how darn lucky we have been, as a family, within our support of T1D. After all, it does take a village to raise children, and even more so, children living with T1D. <br />
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This acknowledgement led to thinking about what I wish I had known to tell everyone all of those years ago during our initial diagnosis. So from my silence-induced mental ramblings, here is one of my favorite top 5 lists of all-time. <br />
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1.) <b>See my children.</b> After diagnosis shock has worn off, I hope that you understand that my children are still the same curious, bright, happy and engaged kids that they were a week ago. Type 1 Diabetes does not diminish their spirits, hopes or dreams. It only requires a bit of daily insulin therapy. <br />
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2.) <b>Recognize that they are rapidly becoming experts in their own care</b>. As adults we often think that only we know best. The truth of the matter is that children living with chronic care needs are more well-versed within their T1D care than most providers, teachers, coaches, friends and loved-ones. As a community support, we should be respectful of their needs and not question whether 'they can eat that' or 'do this' or 'be that'. Support means listening, encouraging and celebrating their T1D journey.<br />
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3.) <b>Let go of your personal bias</b>. This is hard for most everyone, me included. However after our 12 years of post diagnosis, I have learned that it is possible. People that once said they were afraid of blood/needles, or repeated sad stories of long lost relatives, or were concerned of contagiousness, now understand that T1D management is less about the horrors of medical care but more about the necessity of good health. We can shift paradigms but only if we agree to let go of what we think we know.<br />
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4.) <b>Cheer for the kids. </b> Cheer for all of them and often. Young people are living with many invisible layers of complexity from food scarcity, to insecure homes, to medical concerns like Type 1 Diabetes, and this is just to name a few of the very 'adult' issues that are happening. I love cheering for the quarterback just as much as I do for the child that quietly draws. When my girls were little, we made it a point to celebrate their success but to also point out peers that were accomplishing their own goals. To this day, I firmly believe that this generation will be changing the course of our world by simple improvements. All kids deserve our encouragement because everyone has something.<br />
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5.) <b>Childhood is short</b>. With so many necessary T1D tasks, I never wanted to lose sight of the magic of being a kid. Encourage your loved ones living with T1D to try out for the sports team, sing loudly, be silly and stay up too late. Eat the chocolate. Be a little naughty. Go to overnight camp and have FUN! Until there is a cure, there is a life waiting to be lived and no one should waste a second of it. When you interact with my girls, remember that they may sound like well-versed adults, they are still kids. Enjoy them. Have fun with them and be amazed by all that they do. However, most of all, recognize that they are light-hearted goofballs that just happen to wear an insulin pump and still believe that life IS good.<br />
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Merry April - and may there be no more SNOW where you live!<br />
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#ThisisDiabetes<br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-60669470614357350222018-04-05T17:04:00.000-04:002018-04-05T17:04:40.680-04:00Teenaged Diabetes Ramblings for NewbiesThe girls are continuing to do well with school, activities, work and T1D. Nothing seems to slow them down. In general, life is very good and they are living their lives just like any of their peers. They often stay up too late, rather hang out with friends than do homework and love to shop for new clothes. They also work hard, get good grades and help us around the house. It's not always perfect but we have a lot of love for these two young people and feel grateful for each moment. <br />
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I think that is something that I always wondered about... what would the teen years be like? <br />
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And most importantly, would our daughters be happy?<br />
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The answer... YES! Yes, they are happy, joyful and sometimes, a bit too spunky! They are just the way that you would imagine in any other family. T1D is not overshadowing their joy in the slightest.<br />
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I say this to continue to reassure the new families that dealing with a first-time diagnosis. It may be very overwhelming with learning, coping and managing T1D. I guarantee though, that in just a few short weeks, life will resume a new normal. In a few months, you will begin to adjust almost seamlessly and in a few years, you might even forget what it was like before T1D entered the picture.<br />
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It gets better, it really does. <br />
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Keep finding your joy!<br />
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Hugs,<br />
Naturally Sweet Sisters<br />
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PS... Proud mama alert... find the NSS oldest in this article (quote). She is wise beyond her 16 years! <br />
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http://diabetesstopshere.org/2018/04/05/thisisdiabetes-on-capitol-hill-2018-call-to-congress-recap/<br />
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#ADA #C2C018 #ThisisDiabetesNaturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-68551413131389414302018-03-27T21:58:00.000-04:002018-03-27T21:58:17.320-04:00ADA Call to Congress 2018<div class="separator" style="clear: both; text-align: center;">
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A few days ago, our oldest daughter and I had the pleasure of attending the American Diabetes Association 'Call to Congress', held in Washington, D.C.. <i>And wow!</i> What a wonderful opportunity it was to speak, share and to listen to over 200 other advocates as they told their own personal stories of living with diabetes.<br />
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There are these amazing moments in our lives in which suddenly you realize that you have an ability to communicate not just for yourselves but for the greater world at large. This was one of those moments. <br />
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As we walked into a meeting with Congressman Mike Bishop, 8th District, of the state of Michigan, I could sense an exciting chance to help further teach what we as patients and families live with through having been diagnosed with T1d. While we have learned much on our journey and do our best to maintain health, there is nothing more that we would like to have than a CURE. With this in mind, our meeting started and in a few moments, I watched as my daughter calmly begin to speak. <br />
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This is what she shared:<br />
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"Diabetes is a disease that goes with me wherever I go. It is something that I can't ignore or take a day off from. By looking at me, you might not realize that I am a person living with diabetes. You would also not know that my little sister and many of my friends have diabetes. It is truly an invisible disease. It also does not discriminate and anyone, at anytime, can be diagnosed. I have watched my friend become diagnosed and I have had to be the support system for them. This is something that no one has asked for and something that no one deserves. This chronic and life-threatening disease needs a cure. That is exactly why research funding is so very important".<br />
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Then, she casually pulled out her blood sugar meter and begin the process of checking her glucose. Congressman Bishop spotted the attached car key and questioned why the two were paired together. Our daughter explained that when she drives, she must check her blood sugar. This was a surprise as it was not widely understood that checking happens beyond mealtimes, but also, during sports, activities, parties, holidays, at night and well, even at a Congressman's office. <br />
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The story she shared wasn't overly dramatic but it was honest and authentic. Checking glucose happens every day, multiple times throughout a day. It has become such a routine event that we rarely think about the process but in this setting, watching a pretty, well-spoken, young person calmly use a needle lancing device on their finger, only then to squeeze out a blood droplet, felt barbaric. Even when she correlated the data to her technologically advance Continuous Glucose Monitor (CGM), it still felt like not enough in terms of progress had been made. There should be more (and better) diabetes treatments. Where are the implantable sensors? The true artificial, fully automated pancreas? Research is only as good as the funding it is provided. <br />
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Within the room, there was an empathetic silence in understanding that life with diabetes is difficult. As she finished speaking, smiling through her testimonial, the reality became even clearer; people living with diabetes need better. Each head around the table nodded in support of improving care and helping our patients and families. Yes, we can do this! We can make change.<br />
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When the meeting ended, we shared our thank you's and exchanged our good-bye's for the time being. There is more work yet to be done and we will carry on with hope that we are continued to be heard. You can join our advocacy efforts by attending your own home-town meetings and through sharing your story. I would love to hear back on your involvement.<br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-5753410519230261432018-03-08T14:03:00.001-05:002018-03-08T14:03:38.220-05:00GET INVOLVED - TWO RESEARCH STUDIES<i><span style="color: magenta;"><b>Hi Patients, Families and Friends - </b></span></i><br />
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<i><span style="color: magenta;"><b>Just a quick note to share that there are TWO exciting research opportunities through Nemours. You do NOT need to be a patient or live in the area because these are both fun ONLINE opportunities. Read more below for qualifying details and please, feel free to SHARE this post to help us fill up their research study so we can improve T1D care for all!!!</b></span></i><br />
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<i><span style="color: magenta;"><b>Research is the magic medicine of helping to improve care while also feeling EMPOWERED by sharing and bettering our T1D community. I attest much of the positivism within our family to rolling up our sleeves and giving back in ways that create tangible change and better outcomes for everyone living with T1D. </b></span></i><br />
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<i><span style="color: magenta;"><b>If there is just one thing you do, try participating in research - you won't regret it and the payback will be worth every second. </b></span></i><br />
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<i><span style="color: magenta;"><b>Best wishes and thank you!</b></span></i><br />
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<i><span style="color: magenta;"><b>Naturally Sweet Sisters</b></span></i><br />
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<span style="color: blue;">Research Study #1</span> Click <a href="http://bit.ly/TCT1D">HERE</a> for details or type in your browser http://bit.ly/TCT1D.<br />
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<img height="640" src="https://2.bp.blogspot.com/-Px1u0lkiPGE/WjJ_on4WOdI/AAAAAAAAGAM/lnFpwWwXOlQ93KsXzyqk5UxWV74i6TX9QCLcBGAs/s640/Nemours%2BTransdiscliplinary%2BCare%2BDecember%2B2017.jpg" width="481" /><br />
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<span style="color: blue;">Research Study #2 </span>Click <a href="http://bit.ly/youngT1D">HERE</a> to learn more or type in your browser <a data-lynx-mode="asynclazy" data-lynx-uri="https://l.facebook.com/l.php?u=http%3A%2F%2Fbit.ly%2FyoungT1D&h=ATM8KyfEdYsPmxEp_RpzYxwDyMgWeSq6r0coLwcbI7sYiyKR_gJ257vS78qm5azPanIlkR9blleAn4Pyr0H80JgXlL8IfIjOQa-Y84pOWaRI8UiQz3M" href="http://bit.ly/youngT1D" rel="nofollow noopener" style="background-color: white; color: #365899; cursor: pointer; font-family: Helvetica, Arial, sans-serif; font-size: 14px;" target="_blank">http://bit.ly/youngT1D</a><br />
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<img alt="Image may contain: text" src="https://scontent-ort2-1.xx.fbcdn.net/v/t1.0-9/27750592_1792765420794084_4396887934599391465_n.jpg?oh=a1ab6080195338ac90c6fa915c7cc118&oe=5B3A7DB1" />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-38224460548045374502018-02-27T11:07:00.000-05:002018-02-27T11:07:21.964-05:00Treatment Number 2Last night, our youngest completed treatment number 2 towards her Chronic Urticaria. Overall, it seemed to be a smoother process. She knew what to expect in terms of the injections and because of that, her pain tolerance was higher. There was still discussion about the Xolair feeling 'thick' and 'Gooey', however, once done, she moved into the recovery room without any grumbles.<br />
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And now we wait.<br />
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This is what is hard. I so badly want to test her reaction and see if there is an improved tolerance to the sun. Yet, from our much hyped first visit, when we did that, nothing changed. She still had hives the second the sun touched her arms and face. It was a bit defeating and definitely disappointing.<br />
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So we wait. And see if there is improvement as it naturally may occur. <br />
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Thank you for the continued well wishes, support and prayers. We are hopeful, always. <br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-74746365730544600322018-01-23T11:16:00.000-05:002018-01-23T11:16:09.082-05:00January came and then, it left.. but did it take the Solar Urticaria with it?Urticaria is real. <div>
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Finding treatment is hard. </div>
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For months, I have been struggling to get our youngest daughter help. First, I had to find out what was causing the hives. Since she is allergic to the sun, it was fairly easy to deduce that every single UV ray encounter was causing an allergic reaction on her exposed skin.</div>
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Then, I had to record it. How do you show a doctor what it is when you are sitting in a semi-dark, windowless patient room?</div>
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And of course, I had to find the right doctor which turned out to be a pediatric specialist that understood solar urticaria and could prescribe relief.</div>
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However, with all of the wonderful modern medicines available, we were forced to try combinations of multiple and various pills. The effects were lethargy, drowsiness, irritability, and oh my favorite... DID NOT WORK.</div>
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Not one. Not some. Not ALL. Nothing worked.</div>
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In the meantime, I have spent months researching, talking and finally begging to try something that is working for many patients. Xolair. </div>
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Xolair is an injection that is FDA approved for asthma patients. However, when those asthma patients suffered from urticaria, the injections were shown to effectively treat and put hive outbreaks into remission. </div>
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Thanks to a beautiful soul that reads Naturally Sweet Sisters, she reached out and shared the story of her son and how Xolair treated his urticaria almost immediately. After hearing that, I was beyond excited but to get to our ability to try it, we first had to build a health history of the ineffectiveness of meds. </div>
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Why? Because they are cheap and insurance has a better likelihood of approving higher tier, off label drugs only when there is a documented history of ineffectiveness.</div>
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For patients like my daughter, this provides a low class of life. She has been inhibited in everything that she enjoys doing. Being anywhere near the sun can and does cause a reaction. For example, she routinely has hives from the sun shining in the car on the way to and from school. Walking around the neighborhood, even in the winter, cause bright welts to appear on her cheeks - which are the only exposed part of her entire body. She is often teased at school and has had to switch seats to less sunnier ones. One day, during sub zero temps, I caught a sunray in our front window. Opening my eyes, I could see her longing to soak up the warmth but couldn't bare the reaction of bubbled, red and burning, then itching marks. She instead, turned and walked away. Once she was gone, I closed the shades because it simply isn't fair for her.</div>
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A few weeks ago, I scheduled yet another follow-up and determined for better, I marched into the appointment like a mama bear. And thankfully, sparing me the need to further demonstrate our requirement for better treatments, the provider instead talked to our youngest daughter about how she felt. Listening to her, I started to cry and that promptly embarrassed our youngest and also, promptly started the route to approval for Xolair. </div>
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We were required to order epi pens and to agree to each $3,000 shot out of pocket cost, but only if insurance did not cover or if we were unable to make the appointment. </div>
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The protocol is two shots per session. It will require a 30 minute window for mixing (not that it should take that long, but it gives the nurses time to prep and fit us in) and then, once the shot is injected, we are required to stay in-patient until it is determined that there are no asthmatic or allergic/reactions or symptoms. </div>
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Today, she was finally approved through a pre-authorization from our provider to insurance and will be covered at 100%. </div>
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We aren't sure how many sessions will be needed but as I spoke to the nurse today, she was delighted to share that some children experience relief even in one to two days. </div>
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<i>1 or 2 days? </i></div>
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Why would we have such a messed up system that has caused my child to struggle for almost a year? This is why we need better. </div>
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I'll keep you posted on the first shot next week. Stay tuned and wish us luck! </div>
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Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com1tag:blogger.com,1999:blog-1863629804514411236.post-67436120364766365672017-12-20T10:53:00.000-05:002017-12-20T10:53:38.590-05:00Counting Down Until Christmas<div class="separator" style="clear: both; text-align: center;">
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Today is the last day of school for 2017. In a matter of hours, my house will resume a <i>family </i>energy. While mornings will be excessively quiet due to the need to sleep-in, the rest of the day will be full of kids bustling in and out, demands for food and snacks and certainly any intent of a clean home will be long gone. I wouldn't trade it for anything! It's a special time of year and I hope to keep this tradition for years yet to come.<br />
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It is also a good time to take stock in what we are doing within the T1D realm. Having the girls home, even for short bursts during the day, allows me to see how care is really going. I can take a few moments to download insulin pumps and CGMs and I can make changes more easily to their daily insulin:carb ratios. It's a lot easier to do this during break week than when they are at school, work or extracurricular activities.<br />
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To help streamline our to-do list, I created a simple list of activities for all of us, including other families, to do at home:<br />
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<b>1.) Reorder supplies. </b><br />
This is the end of the year and for many, the out-of-pocket and deductibles have been met. From now through December 31st, you can take advantage of ordering DME and pharmacy supplies and for most, this is at no additional cost!<br />
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<b>2.) Spend the last of your FSA. </b><br />
Have money hanging around? Many plans allow over-the-counter pharmacy items to be reimbursed. Check with your employer to see if your plan qualifies to save money on things like alcohol wipes, band aids, contact lens solution, Tylenol, ketone strips and more.<br />
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<b>3.) Review the emergency bag.</b><br />
Everyone should have an emergency diabetes bag that is ready for instances such as natural disasters or on a positive note, impromptu vacations. This is a great time to check on the bag and toss expired, out-of-date, or to replace items that no longer are used. After the bag check is complete, take a moment to remind your family on where and why the bag is available. It's a great time to review a fire safety plan too. <br />
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<b>4.) Give a second look at the 504 plan. </b><br />
Anyone with school aged children should know that the 504 is a living, breathing document. It is not a one time make it and forget it. In fact, December is a great month to review what worked well, what needs improving and what can be added. Schedule your school meeting for January and start the second half of the year implementing your strategies. It's a win-win for all, especially your student.<br />
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<b>5.) De-stress. </b><br />
This is the time of the year where there are many other events, parties and other demands. As a mom of two with T1D, I urge all of us to practice compassion and kindness to ourselves. Say no to anything that is not mandatory. Use your time to spend it with the people that you love the most. Savor and reflect on far you have come in your T1D journey and most of all, celebrate those victories - big and small! <br />
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<span style="color: magenta;"><b><br /></b><b>Happy holidays from all of us at NaturallySweetSisters.com! </b></span></h3>
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-31460570164059066442017-12-14T08:51:00.000-05:002017-12-20T10:56:30.995-05:00We need your EXPERTISE!!! Please JOIN US in Helping to Improve Our T1D Community<div class="separator" style="clear: both; text-align: center;">
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<a href="http://bit.ly/TCT1D">STILL TIME TO ENROLL!!!!!!! SIGN UP TODAY!!!!!!</a></h2>
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<span style="color: red;">Click<a href="http://bit.ly/TCT1D"> this link</a> to enroll!!! <a href="http://bit.ly/TCT1D">http://bit.ly/TCT1D</a></span></div>
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<span style="color: red;">Sometimes, you may wonder if there is a way to help others, to make small improvements that lead to better changes. As you may know, this is what I consider to be one of the key 'silver linings' within T1D... when we are able to use our personal knowledge and expertise within the T1D community, we then receive the satisfaction of knowing that we aren't just waiting, but that we are actively working together to change the face of T1D. </span></div>
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<b><span style="color: red;">Today, we have the perfect opportunity for families with children ages 11 to 16 years old (AND PARENTS TOO!!!) around the country.</span></b></div>
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<b>Teens and Parents will also earn $ for answering questions about T1D within a set period. </b></div>
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<b>This is an excellent opportunity to share that T1D knowledge is VALUABLE! </b></div>
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<b><span style="color: #cc0000;">⏩⏩⏩⏩ HELP US DESIGN </span><span style="color: #674ea7;">A NEW APPROACH </span><span style="color: #cc0000;">TO CLINIC VISITS ⏪⏪⏪⏪</span></b></div>
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<b>WHAT CAN I DO TO HELP?</b> </div>
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Many adolescents struggle
with managing type 1 diabetes (T1D) and about 75% of them have A1Cs greater
than target recommendations. This often goes hand in hand with coping
difficulties, lower quality of life and high risk of complications.
Psychosocial factors are major influences on T1D outcomes, but regular T1D care
often does not address these issues. In this 3-year, NIH-funded study, Dr. Tim
Wysocki will coordinate the development and testing of a Transdisciplinary Care
(TC) model in which T1D is co-managed by an Advanced Practice Nurse, Dietitian,
and Psychologist who will see adolescents together. The project will use
“crowdsourcing” to obtain input from separate crowds of teens with T1D,
parents, and healthcare providers to gradually develop this new model of
healthcare delivery. Once the TC model has been developed and team members are
trained, the team will complete a randomized controlled trial to evaluate
effects of the TC model on health and psychosocial outcomes. We are currently
recruiting for the TC Model Development Phase. </div>
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<b>WHO CAN HELP?</b> </div>
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If you are a teen with T1D between ages 11 and 16 or
a parent (or legal caregiver)of one, follow this link to learn more: <a href="http://bit.ly/TCT1D">http://bit.ly/TCT1D</a></div>
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<b><span style="color: red;">WHERE DO I SIGN UP OR GO TO LEARN MORE?</span></b></div>
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<span style="color: red;">Click <a href="http://bit.ly/TCT1D">HERE!</a></span></div>
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Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-90638794821291990232017-12-06T10:06:00.001-05:002017-12-06T10:06:53.599-05:00Working T1D In - On Their TimePart of my success strategy in taking care of the T1D monster is to find the easiest, least burdensome way to manage the myriad of 'extra' tentacles like blood work, eye exams, allergists, paperwork and even supplies. I do this by focusing what works for us and when.... NOT by robotically following the alloted plan of action. For instance, I try to schedule A1C appointments at three <i>and</i> six months to guarantee we get a time that works, and I often order supplies at night while everyone is asleep, using email to our DME - something that I didn't even know was an option until I asked. For eye appointments, we schedule the girls together, pick up the scripts and then, I order online at home at night. This often involves a slight bit of extra time to work the appointment into our schedules, but the ease of which it is accomplished, far outweighs the calendar dates. <div>
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After last week's multiple clinic appointments, we still needed to obtain labwork. Through the years, I have found that our walk in neighborhood lab is more accessible as there is never a wait time. Conversely, the pediatric lab at our local hospital always has a long line and while the process is geared exclusively to children, it takes extra time to do the exact same procedure. This wasn't a big deal when my girls were in preschool but today, with a fear of missing homework, tests and exams, we try to avoid any extra time spent in the hospital. In turn, this relaxes my girls and helps them to not look at blood draws as both a literal and figurative pain. </div>
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So from last Thursday's GI appointment, we looked at times where we could make it work. Friday was out as there were already too many things going on after school and to be honest, I wanted to give the girls some time off from anything medically related. The weekend is always a bust as the lab is closed and so, we geared our blood draw time towards Monday afterschool. Together, we strategized to make a plan to pick up the girls at dismissal and to head directly over to the lab. I went ahead and gave our endo team a head's up of the plan so that they would know when to roughly check for completed labs. </div>
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All should have been well. Except that this is real life and with real life comes this messy, unplanned series of interruptions. The girls learned that one of their service organizations called an inpromptu meeting after class to discuss the preparations for a holiday celebration at the local senior center. </div>
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That's right, the girls and several of their classmates are volunteering at their local senior center during the holiday and they wanted to meet and discuss the evenings' events.<i> (Side note: TEENAGERS VOLUNTEERING!!!!)</i></div>
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Vs. a blood draw.</div>
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If you read my post last week, you will know that I am struggling with the notion of placing T1D at the top of the mountain of life. Sure, we could spend extra, anxiety riddled time at the end of our second day of missed school in waiting for a blood draw. Then, we would have been done with <i>a blood draw as a need</i>. However, we would have had two very unhappy kids, feeling overwhelmed by the entire process and then, ultimately feeling even more negative towards an autoimmune disease that has no cure. <i>We do NOT need negative feelings.</i> </div>
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We wait. We live life as kids first, T1D second and we recognize that this health journey is a marathon, not a sprint. That the needed blood draw will still happen. That the results may or may not require changes to medication, and/or T1D maintenance. Life will continue and my girls will feel whole, centered and balanced as they continue to achieve everything that is important to them, while managing T1D. Most importantly, we will fulfill the need to have positive outcomes/outlooks. </div>
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So yesterday, on our own terms, we finally made it to the lab. Confidently, my youngest daughter walked up to the check-in desk and recited her first and last name plus her birthdate. She then walked back to me to the waiting couches and sat down. Sixty seconds later and she was called back. I asked her if she wanted me to go with her. Now too big to sit on my lap, I usually stand next to her and hold her hand while the tech draws up the samples. Without hesitation, she shook her head no and said she was going to be fine. A few moments more and she returned with a freshly neon pink taped cotton ball and a smile. We immediately headed out and back to the budding independent teenaged life that is rightfully, very important to her. </div>
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In that moment, it is easy to see that the decisions we make are the best decisions. Maybe it was the ease of the clinic, maybe it was waiting a bit longer, maybe it was just getting a good night's sleep. Whatever it was, in that moment, it was the best possible outcome for our daughter. </div>
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Our goal is to have the most positive outcome and overall outlook towards one of the most intensive self-managed autoimmune diseases in the world. </div>
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I think we are on the right track. </div>
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Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-41813147730775899392017-12-01T09:14:00.003-05:002017-12-01T09:14:29.191-05:00Parenting High Achieving Kids with T1DWe just wrapped up what felt like a world tour at our clinic. Four appointments in two days, with two daughters and a half dozen providers that have become part of our team. When we are done, it is a mixture of relief, exhaustion and gratitude. I love our 'people' but the reality is that in times of T1D need, this is a huge burden.<br />
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In the eyes of my girls, it can be summed up into a negative knot of things like: missing school, missing important academic tests, skipping practices, missing club meetings, rescheduling work dates, not getting perfect grades, not getting paid, feeling like you let your friends down.... <br />
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This is the real burden of T1D for many. It isn't the steps needed to monitor blood sugar, dose insulin or change infusion sites, but it is the imbalance of prioritizing what is most important to the patient.<br />
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To our provider that said T1D needs to be at the top of the list, I understand that but the risk is that shifting something to the top may result in the breakdown of everything else and that may lead to depression, avoidance and non compliance. For a mom that watches closely to ensure that her kids are free to not let T1D hold them back from anything they want to achieve, I think we need to be ultra careful in our language that depicts T1D as the most important part of a teenagers day. It is important and I agree that we need to find a way to fit it in. However, if we make T1D the domineering influence of everything our kids accomplish, we will in turn be sending the message that if their care or A1C is not perfect, than they will have failed. I don't know about you, but I am pretty certain that there is no way to get an 'A' on how you take care of your T1D. The best we can do, is truly the best that we can do.<br />
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Which brings me to the this thought and something that I want to start a conversation on... how do we balance 'Kids First, Diabetes Second' with our high achieving older children? I am slowly transitioning care to the girls (age appropriate steps toward independence) and am not necessarily the main caregiver that I used to be. I am more a support system for the steps/tasks that they do not want to do (insurance, night-time blood sugar checks, supplies, other med reminders, etc) and that leaves more on their shoulders. <br />
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How do we teach the understanding that it is still a balance to manage T1D while living a full, wonderful life? And for our children with T1D, how do we express the need to understand that there is 'perfect' YET STILL, the understanding that there is a need to manage daily blood sugar tasks. In other words, this is a marathon, not a sprint. We can't give up on taking care of everything if one thing like A1C is not perfect. <br />
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I would love to hear your ideas and thoughts on successfully raising high achievers that seek perfection in life. Can we help them find their balance?Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-86542000772066904732017-11-02T11:29:00.000-04:002017-11-02T11:29:31.375-04:00November is National Diabetes Awareness Month<div class="separator" style="clear: both; text-align: center;">
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November is National Diabetes Awareness Month. Ironically, the month long salute to the need for healthcare improvements and ultimately, a cure for T1D, culminates with a blue-ribbon wearing explosion on November 14th. The irony for a mama of two with T1D, is that special day, happens to also be my birthday. <br />
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Weird, right?<br />
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Since 2006, my BIG birthday wish has remained unchanged. Each and every year, when I blow out the candles, I take a moment to think long and hard about what I hope to have come true. In the early years, I wished for nothing more than a cure. However, over time, I have adapted my desire to include things like:<br />
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"More acceptance"<br />
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"Less burden of care"<br />
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"No limitations"<br />
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"Long and healthy life"<br />
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This year, eleven years post dx, my wish has evolved to include perhaps the most simple desire of all. <br />
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"Happiness"<br />
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As I skim through the many T1D sharing sites, the news of November is National Diabetes Month is riddled with with hurt, fear and sadness. While the reality is that in order to receive more funding for pediatric and adult research, often the news must reflect a call to action that shares the worst parts of living with an incurable disease, this 'bad news stream' also damages the patient's ability to positively cope with the care required UNTIL there is a cure. <br />
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For all of us, I want to remind the world of the many gifts that we can also celebrate while living with T1D.<br />
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<li>Success in developing and creating insulin in 1922 thanks to Dr. Banting. </li>
<li>Producing the first chemically synthesized insulin in 1963 thanks to Dr. Sanger.</li>
<li>Improving injection therapy to include the first insulin pen in 1985 thanks to Novo Nordisk.</li>
<li>Releasing the first insulin pump in 1992 thanks to Medtronic.</li>
<li>Performing the first islet cell transplant surgery in 2000.</li>
<li>Creating the closed loop pancreas project thanks to the University of Cambridge in 2013. </li>
<li>Developing the iLet thanks to Dr. Ed Damiano in 2015. </li>
<li>2017 Medtronic's release of the next generation insulin pump and beyond..... the sky is the limit! </li>
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These reminders of advancements in care might bring happiness and a reminder of why we also celebrate November is National Diabetes Month. While we need to continually push to receive the funding necessary to find better improvements and ultimately, a cure, we also must take time to review where we once were and how much better our lives with T1D have become. <br />
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Happiness isn't saying that we accept T1D as our fate forever, but it is the key to unlocking the positively of living life - no matter what - as fully and completely as we can. <br />
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And with T1D, accepting happiness is almost as good as insulin. <br />
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Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-30287924133613914792017-10-25T11:14:00.001-04:002017-10-25T11:14:55.377-04:00Family Diabetes Camp <div>
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Attention Families and Friends from Michigan and those willing to travel.....<div>
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Many of the parents that I speak with often are hesitant when it comes to making the leap to try T1D camp. While our family personally adores everything about camp <i>(it's magic I tell you!!!)</i>, I do understand the initial apprehension. Those first few months are often overwhelming with just managing the challenges of living with T1D day to day (or even hour to hour for those ping-pong days). Adding in a camp experience can feel insurmountable. How do you send a child to an overnight experience when you are still learning? <div>
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It can be done! We are proof of that. And so are many, many other happy campers. Yes, I think it is OK to be cheesy with camp slogans because, well, it is just the magic of camp. Big kids and little kids LOVE it. <br /><div>
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My friends at the ADA have come up with a wonderful solution. To help parents and kids ease into the transition of attending camp, they have developed a program for families to experience overnight camp together. </div>
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This is also a wonderful time to reunite with summer campers and to recreate some of the fun memories that were had the previous year. And because this is for families, parents can meet other caregivers of T1D and share in the camaraderie of walking the same path in life. I have also been reassured that there are sessions that will be kids only and others that are parent only, so while you are having fun together as a family, you won't feel like you are on top of one another. It's the best of both!</div>
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Lastly, camp recognized that many of the graduated campers wanted just one more time together in having fun. To make this happen, the ADA created a special Young Adult Retreat. Parents are not necessary for this age group. Instead, the young adults (a mix of new, first time campers and alumni ages 18-25) can meet up for a weekend of bonding and silly shenanigans. There will also be new information on technology, living your best life with T1D and more! </div>
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Details are below. Enjoy!</div>
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<b>Registration is now OPEN!<u></u><u></u></b></div>
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<b><span style="font-family: TimesNewRomanPS-BoldMT; font-size: 14pt;">CAMP MIDICHA WINTER FAMILY/YOUNG ADULT RETREAT<u></u><u></u></span></b></div>
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<b><span style="font-family: Verdana-Bold;"><span class="aBn" data-term="goog_740267617" style="border-bottom: 1px dashed rgb(204, 204, 204); position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">February 9-11, 2018</span></span><u></u><u></u></span></b></div>
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<span style="font-size: 10pt;">This overnight family retreat offers a family bonding experience while celebrating and learning more about your child’s diabetes. Physicians will be there to speak and educate parents about upcoming diabetes trends as well as overall diabetes wellness. Children will be able to enjoy all sorts of winter activities while staying at the YMCA’s Camp Copneconic. Cost per person is $75 this includes all food, lodging, education and fun activities. Children ages 5-17 only. Check in will be at <span class="aBn" data-term="goog_740267618" style="border-bottom: 1px dashed rgb(204, 204, 204); position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">7 pm</span></span> <span class="aBn" data-term="goog_740267619" style="border-bottom: 1px dashed rgb(204, 204, 204); position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">Friday, February 9</span></span> and check-out will be at <span class="aBn" data-term="goog_740267620" style="border-bottom: 1px dashed rgb(204, 204, 204); position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">11 am Sunday, February 11, 2018</span></span>.<u></u><u></u></span></div>
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<b><span style="font-size: 10pt;">NEW THIS YEAR! YOUNG ADULT RETREAT AGES 18 TO 25!<u></u><u></u></span></b></div>
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<span style="color: black; font-size: 10pt;">Camp alumni and young adults, ages 18-25 with diabetes, are welcome to join us that same weekend for the “Young Adult Retreat,” for fun activities, ice breakers, meet-and-greet opportunities with doctors, and more! </span><span style="font-size: 10pt;">Check in will be at <span class="aBn" data-term="goog_740267621" style="border-bottom: 1px dashed rgb(204, 204, 204); position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">7 pm</span></span> <span class="aBn" data-term="goog_740267622" style="border-bottom: 1px dashed rgb(204, 204, 204); position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">Friday, February 9</span></span> and check-out will be at <span class="aBn" data-term="goog_740267623" style="border-bottom: 1px dashed rgb(204, 204, 204); position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">11 am Sunday, February 11, 2018</span></span>. Cost per person is $75 this includes all food, lodging, education and fun activities.<span style="color: black;"><u></u><u></u></span></span></div>
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Register for either retreat with the link below!<u></u><u></u></div>
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<b><span style="color: black; font-family: Arial, sans-serif; font-size: 12pt;"><a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://www.diabetes.org/campmidicha&source=gmail&ust=1509026955967000&usg=AFQjCNG5phhui0i3Nl_xRMjIbv79iNtwRA" href="http://www.diabetes.org/campmidicha" style="color: #1155cc;" target="_blank">www.diabetes.org/campmidicha</a><u></u><u></u></span></b></div>
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For any questions on either retreat please feel free to contact:<u></u></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Krista Lang<u></u><u></u></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Camp Manager<u></u></span></div>
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<span style="font-family: Arial, sans-serif;"><u></u><u></u></span></div>
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<span style="font-family: Arial, sans-serif;">300 Galleria Officentre, Suite 111<u></u><u></u></span></div>
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<span style="font-family: Arial, sans-serif;">Southfield, MI 48034<u></u><u></u></span></div>
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<span style="font-family: Arial, sans-serif;">Phone: <a href="tel:(248)%20433-3830" style="color: #1155cc;" target="_blank" value="+12484333830">248-433-3830 ext. 6706</a><u></u><u></u></span></div>
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<a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://diabetes.org/&source=gmail&ust=1509026955967000&usg=AFQjCNEuoHACD3bIEL4e4fksSkZVvGJ1dQ" href="http://diabetes.org/" style="color: #1155cc;" target="_blank"><b><span style="font-family: Arial, sans-serif;">diabetes.org</span></b></a><b><span style="font-family: Arial, sans-serif;"><br />1-800-DIABETES <a href="tel:(800)%20342-2383" style="color: #1155cc;" target="_blank" value="+18003422383">(800-342-2383</a>)</span></b></div>
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Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-19031279349053929002017-10-25T10:58:00.001-04:002017-10-25T10:58:39.868-04:00Acceptance<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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Not long ago, as my daughter and I were picking up some random groceries for the ever-empty-teenagers-eat-everything pantry, my cell phone suddenly shrilled the loud, needy and attention demanding BEEP of blood sugar rising. My youngest daughter, not immune to the sound, looked towards me annoyed but dutifully began pulling out her pump to add insulin. <br />
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((And yes, she did this without first checking on a meter, something that perhaps could be considered outside of protocol - because at this stage of 'teenager', my battle isn't with perfection, it is with just <i>taking action</i>.)) <br />
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As she swiftly adjusted her insulin dose, my eyes locked onto a little kid about four years of age, standing just a few feet away. Holding my breath, I wondered how this little person staring would affect her mood and future resistence to feeling like she wasn't always fitting in. Staring can do that, especially when it happens frequently, and to a young person that may or may not always feel 100% confident. In this exact moment, there was no escaping the laser locked focus of someone clearly witnessing something they had never before witnessed.<br />
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<i>Side-note: Zoo animals have nothing on us. I get you Mama Giraffe.</i><br />
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Enraptured by my daughter's cool electronic device, he softly whispered "Wowwwww" and stared as she pushed buttons, making her pump whistle the delivery of insulin and shrill another beep once complete. His mom intently reading labels was either immune to what was happening or delicately trying not to also stare. <br />
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The little boy, unable to no longer keep his excitement quiet, pointed and said, "What is that?"<br />
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"My insulin pump. It gives me medicine."<br />
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The little boy solemnly nodded his head and said, "That's cool". <br />
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Watching the interaction with amusement, I am certain that the words <i>insulin pump</i> although meaningless, intuitively felt significant. Clearly he understood the universal <i>medicine. </i><br />
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He then asked, "Do you feel better?"<br />
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My daughter smiled and said, "I do feel better." <br />
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Her reassurance in feeling better satisfied any further questions and a moment later, he shared "I have this", and holding out his hand, he unveiled a very sticky, wet piece of what we call ABC gum - <b>a</b>lready <b>b</b>een <b>c</b>hewed. <br />
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Despite it's clearly unhygienic display, my daughter made no show of disdain and simply replied, "That's cool." <br />
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A moment later and each waved a friendly good-bye, parting ways and probably forgetting the entire exchange of curiosity.<br />
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Later, sharing the story with my husband, he offered an interesting thought. <br />
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In a world of 'differences', wouldn't it be nice if we all just accepted with a 'that's cool?' and then moved on?<br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-46485787236019893462017-10-09T11:48:00.001-04:002017-10-09T11:48:29.562-04:00Diabetes and Halloween Recently, our small community received the news of three new families now living with T1D. As always (now through a cure) my heart not only breaks but I also feel this long inspired determination to help each newcomer adapt and adjust to the best life with T1D possible. Because I am on a kick with Twitter hashtags @natsweetsisters, these are a few of my favorites: <br />
#togetherwecan #improveT1D <br />
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They kind of ring a perfect bell, right? The girls and I think so too!<br />
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Along with that, I have spent over a decade testing the analogy that within T1D, kids are first and diabetes is second. Always. I firmly believe that we can live our lives in the fullest manner possible if we remind ourselves of that cherished motto. There are no limitations when you decide how best to fit T1D INTO YOUR LIFE and not, fitting your life into T1D. Wash and repeat. It's a powerful, cleansing mantra! <br />
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And it works well, especially during the Halloween holiday madness. <br />
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To begin with, just ask yourself a few questions.<br />
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1.) What was Halloween like before T1D?<br />
2.) What would you like Halloween to be like after T1D?<br />
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My guess is that most of us, would enjoy a carefree Halloween just as it was before T1D. The great news is that is VERY doable! <b>The lesson that I learned regarding food and holidays, is that to children, it is NOT about the candy. It is about the gathering, counting, bragging and admiring of the candy. </b>On Halloween, kids are working to amass as much candy as quickly as possible. If you have ever observed the evening shenanigans, you might have noticed costumed children literally running from door to door. The little (and big) kids barely slow down in their efforts to ring as many doorbells as possible. It is one of the reasons that masks are not as favored; the kiddos need to see to be able to run while avoiding sprinklers, lawn art and benches. The same spirit of excitement holds true at fun Halloween style carnivals and Trunk-or-Treat events. Kids run and parents yell, "Slowwwwww down!". I don't know about you, but mysteriously, on Halloween, my kids could never hear me. <br />
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Once the speed candy gathering has ended, there is often a need for some of that beloved candy. Blood sugars that spiked in excitement, start to regress and drop as blood sugar moves down. A well timed sugary treat is often wonderful and as parents, the value of the gathered candy increases. Suddenly, the candy isn't as much of a nuisance as it is a refreshingly 'free' replenishment of low blood sugar goodies. Thank you to our friends and neighbors for helping out! <br />
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As you wind your way back home, the tabulating and bragging begins. Many kids do not want to even eat the candy at the start as it will take their stash of 45 snickers and 26 kit kats down by one. After a round of selfie candy pictures, the kids like the idea of knowing that it is their candy and will place it into a special plastic container marked with their name and attempt to hide it within the family pantry. <br />
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You may notice the volume increase within your house. Giggly stories may be shared about the family that gave handfuls of full size candy-bars or about the one odd house that passed out coupons. Soon after, quiet resumes and bedtime will ensue and then, Halloween will be another happy memory just as it was before T1D. <br />
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Here are a few fun ways to continue to enjoy Halloween:<br />
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1.) Print up <a href="http://typeonenation.org/wp-content/uploads/2016/10/JDRF-Halloween-Guide-Carb-Counts.pdf">Halloween Carb Candy Counts </a>and bring them along as you Trick-Or-Treat. I also like to tape a set onto the plastic container or bag that will hold the candy within the pantry before we return home. That way, everything is ready to be stored and if someone wants to eat it without me, I have a much higher chance of seeing an appropriate bolus. <br />
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2.) If some of the candy is not suitable, make sure you clearly discuss the reasons with your child (Chewy candy for braces, nut candy for allergies, scary weird serial killer candy that should be thrown out). Try not to say <i>"because of T1D"</i>. After all, we know that all of our kids can eat a healthy, balanced variety of foods, which for kids includes the occasional sweet treat. <br />
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3.) If a Halloween Witch came to take the candy BEFORE T1D, then a Halloween Witch may want to come after T1D. The best way to make a relaxed and fun evening is to follow the pattern that you had prior to diagnosis. <br />
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4.) Serve a well planned meal before heading out. Running around the neighborhood takes a lot of energy. As part of the festivities, our family likes to enjoy a fun meal of mummy hot dogs, ghost cheese shapes and crackers, veggie monsters<i> (use toothpicks to create fun characters with broccoli, olives, carrots and celery. Cream cheese makes great eyeballs) </i>and lots of ghoulish water - black water <i>(our Kroger store carries this)</i> is a fun treat for setting the theme of the evening. <br />
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As a bonus idea, if your loved one with T1D is using multiple injection therapy, having food available for a meal after the trick-or-treating is a wonderful way to blend the carbs of candy into the carbs of dinner. No extra injection needed. Going forward after Halloween, it is easy to add a few treats to each mealtime bolus injection to avoid extra shots too. <br />
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5.) Have friends join in the fun. This is a neat way to help show the world that T1D is limitless, even on Halloween. Your loved one with T1D can do anything that they want! Including enjoying a caramel apple or a butterfinger. Or three.<br />
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Happy Halloween!<br />
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<span style="color: magenta; font-family: Courier New, Courier, monospace;">From the Naturally Sweet Sisters</span><br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0tag:blogger.com,1999:blog-1863629804514411236.post-14806568828147728872017-10-06T13:39:00.000-04:002017-10-06T13:39:18.230-04:00Sometimes It's Not About Diabetes But It Always Is<a href="https://scontent-ort2-2.xx.fbcdn.net/v/t1.0-9/22195414_10155746181961499_1667560797718297410_n.jpg?oh=fcaac79b64af6b43c7b1149b46ad648e&oe=5A7A206F" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Image may contain: one or more people, shoes, tree, grass, sky, outdoor and nature" border="0" height="320" src="https://scontent-ort2-2.xx.fbcdn.net/v/t1.0-9/22195414_10155746181961499_1667560797718297410_n.jpg?oh=fcaac79b64af6b43c7b1149b46ad648e&oe=5A7A206F" width="240" /></a>My sweet girls are having the time of their lives during this fall season of golf. Our oldest was blessed with conquering her challenging 'flop shot' and suddenly, her score dropped from low 90's to upper 70's. <i> (Side note: If you do not follow golf, getting rid of points means that you are doing great!)</i> At the same, our youngest found herself placed in the number 2 position as a freshman on our varsity squad. At 13 years old, she is competing with senior girls and holding her own, often besting her partners and pulling in top 10 rankings. It is quite a fun moment for a parent to stand between greens and watch one daughter, then the next and feel nothing but joy as your children play with passion. And did I mention that I really do not even play golf? Yep, this is one skill that is not mom driven. <br />
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Last week, their hard work culminated in a team SEC Conference Championship - a first for their school in many, many years. On top of that, our oldest daughter was Low Medalist for not only the conference tournament but all of the tournaments combined - earning the most points in two divisions (Red and White). Our youngest daughter proudly came in 5th over all, earning a medal too. <a href="https://www.usatoday.com/story/sports/high-school/golf/2017/09/25/sibling-rivalry-propels-pinckney-sec-white-girls-golf-championship/699480001/">The local newspaper took not</a>e and interviewed their coach, plus both girls. They also took a few pictures and marketed the article under 'Sister Rivalry', which of course made all of us laugh as never have two sisters been more opposite. These two are best friends.<br />
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The conversation for the interview focused entirely on their golf game. Readers wanted to know how they got their start, why they chose golf and how it has helped them to learn other skills. Besides a random picture that cleared showed their Dexcom and infusion sites, there was no mention of golf. <br />
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And that was fine. <i>Sometimes it is not about T1D. </i><br />
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As soon as the <a href="https://www.usatoday.com/story/sports/high-school/golf/2017/09/25/sibling-rivalry-propels-pinckney-sec-white-girls-golf-championship/699480001/">article</a> hit the newstand, I happily 'shared' on a few social media pages amongst relatives and close friends. With a hearty congratulations from all, there was also confusion as to why T1D wasn't mentioned. After all, playing 5-6 hour long golf tournaments requires a deep dedication to staying on top of blood sugar management. One living with T1D can't just forget about the highs and lows despite an activity or event. Our JDRF Outreach Chair even sent me an email and said while she loved seeing the girls in the paper, she just wished dearly that there was a mention of T1D to inspire other young athletes and parents. <br />
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Talking to the girls, I asked how they felt and if they wanted to share that part of their victory; the part of managing the game of T1D. Without hesitation, they whole-heartily agreed and said they would share with anyone at anytime as it was just as important to know that anything was possible while living with T1D as it was to do their very best at golf. As my youngest said, "Your dreams don't have to stop because of diagnosis. I dream all of the time!" Her sister chimed in and said, "And look at our dreams coming true." They felt so strongly about ensuring that T1D was present and acknowledged for others as this summer, they became involved with the <a href="http://www.diabetessportsproject.com/champions/">Diabetes Sports Project </a>to showcase how golf and T1D can work well together. As the only female golfers, they take this role seriously. It's hard enough to get girls involved with golf, but throw T1D into the mix and for many, it can be overwhelming. Sharing their success will hopefully overcome both issues. <br />
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This week, a second article will be published in which the focus is not only their amazing golf skills, but their efforts toward T1D management, their dedication to the T1D community and what they hope to accomplish as they grow older. <br />
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I can't wait to share it with you all as positivity and inspiration is contagious. Even I feel reinvigorated with T1D care. It's hard to manage from the fringe. This little boost has helped me too, even though I didn't think I was overly focusing on it. As a mom though, it's hard not to. In the deep space of my brain, it is always there. See, sometimes it's not about the T1D, but it always is. <br />
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* To read the article about the SEC Championship, check out this <a href="https://www.usatoday.com/story/sports/high-school/golf/2017/09/25/sibling-rivalry-propels-pinckney-sec-white-girls-golf-championship/699480001/">link!</a><br />
**To learn more about The Diabetes Sports Project and their Champions, including our NaturallySweetSisters, check out this <a href="http://www.diabetessportsproject.com/champions/">link!</a><br />
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<br />Naturally Sweet Sistershttp://www.blogger.com/profile/16430311447273580229noreply@blogger.com0