tag:blogger.com,1999:blog-51987899537325140222024-02-19T10:25:24.126-05:00T1 FamilyThis blog shares the daily life of a family living with two Type 1 diabetics.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.comBlogger69125tag:blogger.com,1999:blog-5198789953732514022.post-75803557483946093482017-07-19T09:46:00.000-04:002017-07-19T09:46:08.696-04:00Friends For Life 2017: A new perspective<div class="separator" style="clear: both; text-align: center;">
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As we continue along this journey of living with T1D I rarely blog as it is important to me that I respect Jess's diabetes as her own, and her own story to share now that she is able. I know that it was always hers, but whether right or wrong when she was a young child in some ways it also felt like mine. We have crossed the bridge to where she manages her diabetes as the captain, and I am the first mate. Some days the seas are rough and she needs all hands on deck; other days things are smooth sailing and she manages completely on her own. We remain a team, but our responsibilities have shifted over the years as she prepares for yet another transition of moving out of the house as an independent adult.<br />
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We recently got home from Children With Diabetes Friends For Life 2017, and like our journey with diabetes, our journey with the conference has shifted as well. I will never forget the first Friends For Life conference we attended. Jess's diagnosis was still relatively new, and we were still so emotionally raw. I will never forget the feeling of arriving and being immersed in this island of respite....surrounded by people who truly knew the challenges of living with T1D. The joy and relief of not having to measure food, and yet having everything there and labeled. The unexpected bittersweetness of watching my husband, who had lived alone with T1D for so long, weep with joy as he connected with other adults that shared his journey. The gratitude I felt to this organization and conference for not just supporting <b>Children</b> with diabetes, but all with diabetes. This conference was life changing....not just for Jess, which I expected, but for each and every one of us.<br />
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We haven't missed a conference since. The friends we met there have become our Friends For Life. They surrounded and supported us when Jess's twin needed brain surgery. They sustain us through text messages and phone calls throughout the time in between conferences when carbs are not automatically measured, and where there are not shared looks of knowing after a night full of dexcom alarms. They have led us to wonderful, amazing colleagues and new facets of our careers.<br />
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This conference led to my celiac diagnosis. I had always ignored symptoms, wondered why I was sick so often, and chalked it up to stress. At the conference TrialNet is on site, and Dr. Alessio Fasano conducts his research examining the increased prevalence of celiac disease among those with T1D and their families. I wanted Jess's twin tested, so had my blood drawn as well in order to encourage her. I was more than surprised when it turned out I was the one who actually had celiac. And, once again this conference was life changing.<br />
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I was so thankful to feel better. The first trip to the grocery store after diagnosis was similar to when Jess was diagnosed....reading every label carefully, the focus on the nutrition label rather than on the joy of discovery new foods. It was a new journey.<br />
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Like Sean for so many years, I was convinced I didn't need support. I mean, after all, this was just celiac. In a family with T1D and brain surgery, this seemed like but a teeny bump in the road. And, in some ways it is. But, I realized at this year's conference that like any chronic condition, it too takes a toll. Being invited to a friend's house...stressful. Traveling...stressful. Eating out...stressful. Having to pack and plan for every meal during long days at work...stressful. Confusion with people thinking I am choosing this gluten-free lifestyle rather than realizing that it is an autoimmune disease that I didn't ask for or want...stressful.<br />
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This year's conference was life-changing for me in a new way. Perhaps it is that subconsciously I was looking for support and saw and heard things with fresh eyes and ears. Perhaps I am in a place with Jess's diabetes that it isn't as all consuming as it once was, and therefore my long suppressed need for self-care is surfacing. Perhaps it was serendipity. But, Friends For Life 2017 was an island of respite for me in new ways.<br />
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This year I appreciated the designated gluten-free buffet area more than ever. And, for the first time sat next to a friend from the conference who also has celiac. It was so refreshing to discuss which gluten free foods were delicious. I felt such a relief when dining out not to be the only one who had questions and needed a gluten free menu. It was comforting and enlightening to watch how he handled dining out with celiac, and it made me feel more comfortable in my ability to do so and not feel I was being high maintenance. When another mom to a T1D and celiac, asked how I was doing with my own celiac and shared with me that her child would give up the celiac before T1D if given the choice, I suddenly felt like it was ok that at times I think this new forced lifestyle is hard.<br />
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Like Sean so many years ago with diabetes, I realized that maybe I do need doses of support in living with celiac, even though I feel like I am doing it so well without.<br />
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I returned from this conference filled with gratitude and rejuvenated as I always do. But, this year with new perspective. This conference doesn't just provide much needed support to those living with diabetes and their families. It also provides much needed support and respite to those living with celiac as well. The friends I have met are truly Friends For Life. But, Children With Diabetes is so much more than that...it is Adults With Diabetes, and Celiacs With and Without Diabetes.<br />
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And, it is truly life changing.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com2tag:blogger.com,1999:blog-5198789953732514022.post-8794595567768567692016-05-12T10:47:00.002-04:002016-05-12T10:47:45.221-04:00Making Our Way Through the Teen YearsI've always liked to prepare ahead of time. So, when Jess was eleven I went to the talk for teen parents at Children With Diabetes. And, I have to admit I left a bit panicked. The teen years sounded absolutely horrid.<br />
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Jess will be 14 in just a short time. And, I know we have barely begun the dreaded teen years. I won't lie and say that things are always smooth sailing. We've had our fights. I've wanted to pull my hair out at times. And, I know Jess has too. I'm not the perfect parent. And, Jess isn't the perfect teen.<br />
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But, as Jess finishes up middle school I can't begin to describe how proud I am of her. Middle School years for girls (and I am sure boys too) are no picnic. The drama, the discovery of boys, the becoming a woman issues. There have been a whole heck of a lot of changes as there are for all teen girls.<br />
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Jess entered middle school with the new feelings of wanting to hide her diabetes. She had always been a huge public advocate, but developmentally the middle school years are all about wanting to fit it. So, in some ways we would have been more alarmed if she had not explored these feelings. And, she was so mature about it. We agreed that teachers and the nurse had to know. She wanted a small group of friends to know. But, the other 600+ kids in the school....did they really need to know? Of course not. So, we met with the school and came up with ways to protect Jess's privacy. Wonderful ideas such as having her change for gym in the nurse's office were written into her 504 plan, as well as having a code that she could discreetly use to tell teachers if she has a blood sugar issue. The dexcom and omnipod were discreetly placed where they would never show.<br />
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And, she grew from a child to a woman as she made her way through these middle school years. She had her first real crush, went for the first time to malls and movies without parents, joined the track team, and so many other completely normal firsts. She lived as Jessica, a fairly typical middle school girl, who just happened to have diabetes.<br />
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We compromised during these years. We agreed that she would use her dexcom at school to bolus for lunch. Fingersticks during school would be rare. It would be completely up to Jess whether she wanted to take exams with high blood sugars...she would continue to be protected by the 504, but she would be the one to decide whether a test should be delayed. These compromises might not work for everyone, but they worked for us. I won't lie and say I was comfortable with the fact that some days the only fingerstick blood sugars were the ones to calibrate the dex. But, so far this has worked for us.<br />
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Today we had Jess's 504 meeting for high school. I asked Jess if she wanted to be a part of it and she did. I looked at her, sitting at the table with the principal, teacher, counselors, and nurse. Her dexcom showing clearly on her arm as she wore a tank top. I listened as she explained that she no longer needed to change in the nurse's office for gym. She doesn't care who knows she has diabetes, she explained. I listened as she advocated for herself and helped form her 504 plan for high school.<br />
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Earlier this week I watched her at the endocrinologist's office. She is confident in her ability to self-manage her diabetes. Her A1c is hers, and hers alone. But, I know she will not mind me saying that she continues to be "in goal." I listened as her endocrinologist told her what an absolutely phenomenal job she is doing managing her diabetes, and that Jess makes her job easy. And, I was impressed by the questions she asked.<br />
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And one morning this week, Jess informed me that she had woken low in the night. She explained that she had one juice box. "I wanted to eat way more, but I made myself have the 15 gram juice box as I didn't want to over-treat my low." She proudly told me she started her morning with a blood sugar of 98 and was so proud she hadn't over-treated. It seems like just yesterday she was the little girl that would never wake with a low blood sugar, even if she was 45 and covered in sweat.<br />
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I don't know what the high school years will bring. I do know there will be huge challenges. But, middle school is almost done. And there have been challenges. But, more than that there have been successess. And, those deserve to be celebrated.<br />
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I'd be ok if she continued to want to hide her diabetes. But, I am so incredibly proud of her for having an instagram account that instead says "Type 1 diabetic and proud." I'd be ok if she still carefully placed her omnipod and dexcom where they would never be seen. But, I'm relieved for her that she no longer feels she has to.<br />
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I might wish that she would never take an exam with a blood sugar in the 300's. But, I'm proud of her for choosing to do so and still getting straight A's.<br />
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There have been times that I have wished she would manage her diabetes differently. But, how can I not be proud of the way she has managed it, and the A1c's she herself has earned. Gone are any feelings of a mommy report card. I am but a member of her team now...but she is the one who has earned every excellent A1c she has had this year.<br />
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My little girl is truly no longer. It takes my breath away when I look at pictures of her at seven when she was diagnosed. I know so many are diagnosed so much younger, but she was still such a little girl. Diabetes changed her childhood. I will always hate that it took away her carefree days. I hate that she now cannot remember well life before diabetes, when I have such incredible memories of those carefree days. I hate that soon she will have lived life as long with diabetes as without. But, I cannot hate who it has helped her become. There is no arguing that diabetes has made her mature, empathetic, and resilient beyond her years. Those are amazing gifts and will serve her well as she continues to make her way through the teen years. And, I simply could not be more proud of her.<br />
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<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com1tag:blogger.com,1999:blog-5198789953732514022.post-79168012315427260282016-02-25T17:37:00.001-05:002016-02-25T17:37:24.088-05:00A little girl no more<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Posted with permission from my most fave T1D</td></tr>
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Dear Jess,<div>
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I started and re-started this post so many times. I rarely post now and am so careful to protect your privacy. It is your diabetes. But, I have to let you know how absolutely amazed and proud of you I am.</div>
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I don't recognize at all my little girl. The one that had just started on her seventh year when her childhood was stolen. My eyes will always water when I think about that time. And, I will forever hate the instantaneous way that our lives were shattered.</div>
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Your diabetes was my diabetes back then. You did so much even at the young age of 7...checking your own blood sugar. I remember the first time you gave yourself a shot. Your little hand shaking. But, the management and worry were mine.</div>
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You grew up despite diabetes. You went from this little girl to a young woman who is much taller than me.</div>
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Your diabetes changed with you. You went from being an advocate who read to your class and spoke to large crowds about Type 1, to a middle school student who hated it and tried desperately to keep it hidden. And, then one day I turned around and you were back to advocating...on Instagram this time. I was shocked to see posts that stated "Proud to be T1D."</div>
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As all parents, I have tried so hard to protect you. I've been the mama bear that has taken on anyone who I feel discriminates against you or treats you differently because of diabetes.</div>
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Today showed me such new ways how much you have grown and changed.</div>
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You had your diabetes eye exam today. The nurse felt the need to tell you about a girl who ate candy and went blind. She also talked with you about how she was so happy that she didn't have diabetes as she absolutely could never "do needles" or give up candy. She told you that as long as you did what you were supposed to do and didn't do things like eat candy, you would be just fine.</div>
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As I felt my blood boil, and my mama bear instincts take over (carefully balanced by the desire not to embarrass you as I do so frequently these days,) I watched in amazement as you handled this completely inappropriate situation in your own way.</div>
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Some would say you should have patiently educated her.</div>
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But, as a nurse who works for a retinal doctor and sees people living with diabetes all day long, I will say she should know better.</div>
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You calmly asked me for your candy. And, then ate it in front of her. You and I know that they were actually glucose tabs, but I loved the way you even said "mom, do you have any more smarties? I'd like some more candy" The look on the nurse's face was priceless. But even more priceless was the look on your face when you looked around the room for cameras, waited for her to turn her back, and then quickly gave her the finger.</div>
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I know many will say I should have disciplined you. But, instead I tried not to laugh and was not very successful.</div>
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I love that you realized the ridiculous scare tactic for what it was, and that it was mixed with a good healthy dose of ignorance. I'm ok with the fact that you didn't patiently educate her that people living with Type 1 diabetes can actually have candy. I love that her words did nothing more than piss you off, and that you handled it with humor, and then went on living your life... needles and all. And, I love that her words didn't send you into a panic about going blind. I even loved that when she asked you if you check your blood sugar you looked at her like she was insane. And, when she told you "Oh that's good you check honey because some people don't. What were you today when you checked?" you pulled out your dexcom and said "well I'm 95 now, would you like to see the past 24 hours?"</div>
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I know you will continue to grow and change, and we will see many more ways you process living with diabetes. One day you may patiently educate and hopefully not give people the finger behind their backs. But, today...at 13...I think your response was wise beyond your years. Resilient. Strong. Sassy. You are those and so much more.</div>
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And, I'm so proud to be your mom.</div>
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Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com1tag:blogger.com,1999:blog-5198789953732514022.post-3868196960990400722015-10-15T10:26:00.001-04:002015-10-15T10:26:16.059-04:00Six Years<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Six Years living well with T1D!</td></tr>
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Six years, and look how far you have come. I would be lying if I didn't acknowledge the sadness that this day still brings to me. I will forever hate that you must live with this, and will forever remember you at age seven on that day your carefree childhood was stolen.<br />
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I don't write often anymore. This is every day becoming more "your diabetes." And, while of course it always has been, this is becoming more evident every day. And, it is yours to share with the world, or to keep to yourself. <br />
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But, I need you and the world to know that you simply amaze me. I wish I could have known on that day you were diagnosed what today would look like.<br />
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You are happy (as happy as a teen girl can be) and healthy. You are strong, smart, and funny. You have met people who have become dear friends because of diabetes. And, you have kept your very best friend who knew you "before" in spite of diabetes.<br />
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Gone is the small child who screamed and cried before finger pricks, injections, and site changes. Here is the young woman who does those same site changes herself.<br />
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Gone is the little girl who with every single candle did not hesitate before she blew it out to tell me that she wished so desperately for a cure. Here is the resilient teen who still wants that cure, but often has to think of a wish before she blows the candle out.<br />
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Gone are the days that I alone must measure every single morsel you that you put in your mouth. Here are the days where before I can even start, you have often measured your carbs yourself (and bolused!)<br />
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Gone are the days where I sent you to school and held my breath until you came home. Here are the days where I only have a passing thought as to what your blood sugar may be. "I know how to take care of my diabetes" you tell me. And you do.<br />
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And, this week when I silently congratulated myself when looking at your fasting sugar for making the right decision to do a temp basal when your dex alarmed in the middle of the night, you tell me at breakfast "I woke up low last night and ate glucose tabs." You woke up low (a HUGE milestone) and you handled it on your own without me even knowing. Did I mention you simply amaze me?<br />
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Being a teen girl with diabetes is no easy feat. I won't lie and say every day is smooth. I would be trying to fool everyone if I said we've got this down pat. And, there are still days when we all hate this. The highs, the lows, the sheer work involved every single day. Being different as a teen. It is still so hard, the worry is still there, and the wish for better technology and a cure. And, as a mom the new journey of watching something that I have carried for you for so long now become yours to carry. I wish that I could continue to carry this burden for you forever, but yet I am so proud of you for how well you carry it yourself. <br />
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But, I want you to know that I will always be here. And, you never have to carry this load alone. You will always have Team Jessica behind you. But, whereas I have been that captain so far....you are now driving the helm. And, you make an incredible captain.<br />
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<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com1tag:blogger.com,1999:blog-5198789953732514022.post-89384689865369572652015-06-24T20:45:00.002-04:002015-06-24T20:45:58.041-04:00A Guilty ConfessionDear Dr. Jen and the rest of the amazing staff at Jess's diabetes camp:<br />
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After years of us encouraging her, Jess suddenly announced less than 3 months ago that she was going to diabetes camp this year.<br />
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I had gotten used to the idea of her not going. It had almost turned into a joke, where we would ask her if she wanted to go to diabetes camp this summer just to hear her screams of protest that she absolutely would not. "Friends For Life" is my diabetes camp she would yell. And, we had to agree...Friends For Life is absolutely amazing.<br />
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But, then she decided to go.<br />
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And, I was scared shitless. There has not been a single hour in over 5 years that I haven't had thoughts of her diabetes, or been aware of her numbers. For as much as I love Dexcom Share, I now know if she is high or low at school, whereas before I wouldn't hear about it until she got home. It makes the diabetes even more constant. On a recent first time getaway weekend since diagnosis, her dad and I still followed along giving advice as we watched the Dexcom share. It was wonderful to finally get away, but I still woke in the middle of the night to check the dexcom.<br />
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And, I don't mean to wake. But, like many parents I am terrified of nighttime. I know "dead in bed" is incredibly rare. But, I do not know how I would survive if it occurred. And, knowing that more than once we have found our sweet girl covered in sweat with a blood sugar of 42 terrifies us. So, I don't know that I ever sleep soundly...always listening for the alarm, just as when they were babies I listened for their cry.<br />
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So I was terrified to turn over her care to someone else. Would they watch her like I do at night? Would they keep her safe? She can 100% care for herself during the day, and I am thankful and proud at how much she is able to self-manage. I don't worry about her at school, or with sitters. But, at night as she peacefully sleeps she cannot protect herself. I am assured by her endocrinologist that there will come a time when she will wake from lows. But, it has only happened one time so far.<br />
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So, as the drop off day approached, I was filled with nerves.<br />
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But, then I met with you, Dr. Jen. I know you are not an endocrinologist. You had never seen a dexcom. There is an endocrinologist at camp the whole time, but every cabin also has a physician of some specialty or another who sleeps with the children. And, Jessica's cabin, like the others, not only had a physician but also 4 counselors and a dietician. And, you are the physician who would sleep in the bed across from Jess.<br />
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You were kind. So kind. You listened carefully to our fears regarding nighttime lows...taking careful notes. You listed to the explanation carefully of what to do if the dexcom alarmed and how to calibrate it. You nodded understandably when I told you we had changed her nighttime settings so that a bolus wouldn't be given if she was under 160 (as opposed to 120 which is what we do at home.) You made both myself and her dad completely at ease.<br />
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And, so we left her. And, I felt a weight lift. Her dad said to me after 24 hours "I normally feel like I am under water, but now feel as though I am swimming with my head above." We both guiltily talked to each other about how we hadn't realized how much work went into managing Jess's diabetes until we had 24 hours without knowing anything about her care. We were grateful no phones or communication are allowed. We talked about how thankful we were for sleep....wonderful, deep sleep. We talked about how ridiculous it was that her cabin of 10 girls had 4 counselors, a dietician, and a physician and yet parents are normally completely on their own in caring for their child. We talked about how we both feel that parents of kids with chronic diseases need more support. We tried not to think jealously of parents with healthy kids who don't know the burden we and others live with. We tried not to feel guilty that we are enjoying this break, and worried that others will judge us for admitting it.<br />
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But, we also talked about how we wouldn't trade Jessica for the world. How we would gladly care for her forever, and hate the burden she will live with. And, we reminded ourselves of the beautiful people her T1D has led us to.<br />
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So, Dear Dr. Jen...thank you for giving us our first real break in over 5 years. Our work week has been crazy and yet it has still felt like a complete break. We are forever grateful. We know Jess is safe. And, we suspect she is having the time of her life among so many other broken pancreases. Because, as she often tells us, neither myself nor her dad knows what it is like to be a kid with diabetes (her dad was diagnosed at almost 18.) We hope in some ways it feels like a break for her too. We know how much she hates feeling different all the time.<br />
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So, please continue to keep her safe for the next 48 hours. We can't wait to see her and hear about her adventures.<br />
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And, Dr. Jen and all the staff...thank you for choosing to do this with a week of your summer. I'm pretty darn certain this may all be volunteer work. You are giving many tired parents the most amazing gift. God bless you all.<br />
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P.S. Next summer we are going to be smart and take some vacation days while she is at diabetes camp!<br />
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<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com2tag:blogger.com,1999:blog-5198789953732514022.post-22468243500884335272015-03-13T11:14:00.001-04:002015-03-13T11:22:45.220-04:00Two Plus Two Does Not Equal Four in DiabetesI'm ready to throw my hands up in the air and scream this week. Oh, diabetes, I am used to your tricks by now. But, that doesn't mean I like them. Where else can I put in so much work and at the end of the week feel like I have accomplished nothing?<br />
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I was warned about the puberty hormones and blood sugars. I knew it would be more challenging. But, I thought there would be some pattern. I love problems and finding solutions. I thrive at being analytical. I mean I kicked butt on the analytical portion of the GRE's during the brief time I thought about going to grad school. But, there is no pattern here. There is no mathematical answer to your behavior this week.<br />
<br />
One night you are high. I adjust the rates by the smallest amount possible and keep all other variables the same. The next night you are low.<br />
<br />
Yesterday morning you had lows in the 60's at school. I adjusted the rates by the smallest amount possible and gave you a low carb (10 grams) breakfast...this morning you are hanging out all morning close to 350. Mathematically there is absolutely no way this makes sense. And, there is no in between basal to adjust to.<br />
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We saw your diabetes provider for your routine visit Monday. She adjusted everything. The next 48 hours your sugars were worse then before we even went to the visit.<br />
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I know we will get back on track. Just like I know some weeks diabetes just does what it wants. It could be hormones, stress, the wind...who knows what is affecting your numbers this week. But, I know it will pass. We can manage this and we will.<br />
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What I struggle with is how you feel. You feel horrible when you are high. You don't have a good day. You can't focus in school. You hate feeling sluggish and cranky. And, feeling low isn't any better. And, you are frustrated. You don't think we will get things back on track. You tell me you just want a break from the highs and lows and work...just for one day.<br />
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"I've got this," I tell you. "We can do this." I reassure you that we will get your sugars back in goal again soon. I tell you again that we are a team. We will always be a team. But, God do I wish I could just take this for you. I would gladly take the highs, the lows, all the work to just give you a break. And, I can't. I can give up sleep and at least give you that break. But, I can't take it from you during the day.<br />
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We've been here before. And because we've been here before I also know we'll be back to smoother sailing soon. Maybe this weekend we'll play smash the Omnipod. I think I'll write the word "diabetes" on every used pod. Let's see who wins this weekend, Diabetes.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com1tag:blogger.com,1999:blog-5198789953732514022.post-59935678516505237372015-01-30T21:37:00.000-05:002015-01-30T21:37:56.026-05:00What I Wish I Knew<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7OpHgra43s7S0Q7DU13FPupSgOAqK-EiiVy7-LXs10qfnBfL2RTuUNjZd8HVE0U-yQjiW5pW6OkVn3BeUNKEYonshyR3e-uoSMk-hBPzhfe-gR4knooJKXNv1dI3D889Jq-lUKl8e6Q/s1600/1933786_1166978207730_5607561_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7OpHgra43s7S0Q7DU13FPupSgOAqK-EiiVy7-LXs10qfnBfL2RTuUNjZd8HVE0U-yQjiW5pW6OkVn3BeUNKEYonshyR3e-uoSMk-hBPzhfe-gR4knooJKXNv1dI3D889Jq-lUKl8e6Q/s1600/1933786_1166978207730_5607561_n.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Two weeks before D</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWPn6Gb5w-B3HUfC3plWmSn7Lqrksn-fXnka0zTIsFkd7YQjFmkWVqY6OtRWPA-4zbr2Oe91Xaqswo_fKliqxfhp_IrjCT7IyWNdqVwGw8ZXi_eO6tKu36KQ1WDwDnlQPDn9bFp8Qerg/s1600/photo-19.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWPn6Gb5w-B3HUfC3plWmSn7Lqrksn-fXnka0zTIsFkd7YQjFmkWVqY6OtRWPA-4zbr2Oe91Xaqswo_fKliqxfhp_IrjCT7IyWNdqVwGw8ZXi_eO6tKu36KQ1WDwDnlQPDn9bFp8Qerg/s1600/photo-19.JPG" height="214" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Living well with D</td></tr>
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We watched home videos last weekend. Ironically, the random one we picked was of the time right up until your diagnosis. You looked so healthy and happy. Your last soccer season before you were diagnosed. Your last school concert. Your last vacation. It was the last year of your carefree childhood. The last year I had the luxury of worrying about "normal childhood" things. We had no idea the absolute devastation that lay just weeks ahead. I looked over at you as we watched. I wondered if you realized we were watching "before diabetes." Do you remember those first seven years?<br />
<br />
I wish I had known that terrible night that things would be ok. I still remember the despair I felt. The beginning was nothing less than terrible. Holding you down to give shots. Forcing you to stay on a ridiculously strict meal plan. Mourning our loss of normal. I hated those days.<br />
<br />
I look at you now. Tonight I came home late. Exhausted from a long week with too much work and too little time. Sleepless nights with dexcom alarms thrown in the mix. You had made dinner---all by yourself-just to help out. Last night you overheard me telling your dad that I was less than thrilled about going by myself to your sister's choir concert. "I'll go with you, Mom" you said. "I don't want you to have to go alone." I see your compassion when talking with me about kids at school that are different or teased. I can't help but think that diabetes helped make you such an empathetic, caring, and compassionate young lady.<br />
<br />
You brought home straight A's this week. You didn't delay one single test due to high blood sugars. We've told you that you can. You have a 504. But, yet you didn't. And, you still managed straight A's. I watched you play guitar tonight. It occurred to me that it is your third musical instrument. And, the callouses you have from checking blood sugars are an asset to a guitar player. I discovered a goal setting activity you did in guidance class. When instructed to think about something you want to achieve, you state "I want to become a doctor because I get to help people." When asked to describe whether this goal is realistic you write "Yes, because I have already learned more than most first year medical students." Your dad and I may talk about medicine a bit too much at home, but what I didn't notice until my mom pointed it out is that there is absolutely no mention of diabetes on this two page paper. Even when asked if there are any roadblocks or barriers that might get in the way of you achieving this goal you state that only a few people get into medical school and this might be a barrier or roadblock....but, you never say anything about diabetes. Diabetes simply does not stop you. I don't know if you would have been as interested in medicine if you didn't have diabetes. I think you would have. And, of course I don't know if medicine will truly be your calling. You remind me so much of myself at your age. I knew for certain that I wanted to be a doctor. And, I would like to think that you are exactly where you would have been even without diabetes. I truly think you are.<br />
<br />
I remember how you used to cry and have panic attacks with every single site change. At our first Children With Diabetes conference we asked everyone we could what we could possibly do to help. We tried numbing cream, the buzzy bee...what seemed like a million different tactics. And yet every third night or more our lives were paused for 30-60 minutes while we tried to console you, or while your dad and I fought with each other about the right way to do this (me..."just do it quickly so it is over with...and your dad "don't do it until she is ready"....I later realized this was because he carried his own guilt over your diagnosis.) It was truly exhausting and terrible. And, the other night I realized that other than the "ugh...it's site change night," there is absolutely no drama. Sometimes we use numbing cream, and other times you tell us to forget it and just get it done. But, there are no tears. No panic attacks. You can do it on your own, but still want us to do it for you. And, that's ok. I wish I could do it instead of you for the rest of your life. But, you have become so strong and brave.<br />
<br />
I remember our first vacation to an island only accessible by boat shortly after you were diagnosed. No grocery stores, pharmacy, or doctors on the island. I remember wanting to cancel that trip. I was terrified. What if you went into DKA? What if you had a hypoglycemic seizure? It was an amazing trip. And, we handled everything just fine. You didn't go into DKA, nor did you or have you ever had a seizure. And, I look at where you have been since then. You've hiked the Narrows at Zion...miles away from any civilization and without cell phone reception. You've gone on boat trips to the middle of the Caribbean Sea where you've snorkeled caves and gone to deserted islands. You've gone to the top of Pike's Peak and deep into the Grand Canyon. All with diabetes tagging along. But, you haven't let it stop you. I have talked aloud as I plan for each adventure---hoping to teach you that the key is just preparing. I watch now as I see you do the same thing. We went back to the same island recently. You did have ketones and we did just fine. We are confident in our diabetes management now. Confident that we can handle most things. We didn't feel that way in the beginning. But, we do now.<br />
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Many roads still lay ahead. We have the adolescent years to navigate, and I can't even yet imagine how I will cope with the transition to college. I remember telling a dear friend that the only reason I couldn't wait for those years is that I would finally get some sleep. I was more than a little devastated when she replied "No you won't. You'll still wake up. And, it is even worse because you can't go down the hall and check her and make sure she is fine." But, I believe the bionic pancreas will be here by then. I believe it will be ok.<br />
<br />
I wish I had known....<br />
<br />
diabetes would make you so compassionate and brave<br />
<br />
diabetes would bring our family closer<br />
<br />
diabetes would not stop you from thriving and reaching your goals<br />
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diabetes gets easier...not easy....but easier<br />
<br />
diabetes wouldn't stop us from what we like to do best together...traveling<br />
<br />
diabetes would lead to new passions in your dad and I's careers<br />
<br />
diabetes would lead us to new friends...it would expand our world<br />
<br />
diabetes would lead us to a magical conference in Orlando every July<br />
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diabetes would be why I was finally diagnosed with celiac and then I became healthier and stronger<br />
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diabetes would simply not stop you...you wouldn't let it win.<br />
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I wish I had known that although five plus years later there are still ridiculously hard days, it is ok. You are ok. You are more than ok. You are thriving and I have simply never been so proud of you.<br />
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<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com2tag:blogger.com,1999:blog-5198789953732514022.post-44057138400972346102014-10-09T13:20:00.000-04:002014-10-09T13:20:33.227-04:005 Years<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXREQ0mhErZoZA9unRjsnEtmZg7_SSn50pPRkQOJjv8WKX7ddy-sX4-Bh7a28l-47-93TM0zEOJwtRgk56_dBTrCWODsq41yzgLZDk0p9rPDwGzlfsVIDXoSB91CIU8Ov9JatpufjbLQ/s1600/jess5.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXREQ0mhErZoZA9unRjsnEtmZg7_SSn50pPRkQOJjv8WKX7ddy-sX4-Bh7a28l-47-93TM0zEOJwtRgk56_dBTrCWODsq41yzgLZDk0p9rPDwGzlfsVIDXoSB91CIU8Ov9JatpufjbLQ/s1600/jess5.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">5 Years</td></tr>
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Five Years. Five ridiculously long years that at the same time have gone by in the blink of an eye. I remember that night...five years ago. The night our world shattered. I remember holding you in the emergency room while your sweet little body was violated in ways that would become your normal. I remember the absolute terror I felt thinking about your future. I remember the black that followed. The guilt I felt over that black. We had just had dear friends loose their precious little boy forever to cancer, you see. So, what possible right did I have to experience such absolute devastation over this? I remember holding you down while you screamed for those first shots. You have to know without doubt that your dad and I tried absolutely everything we could think of to avoid having to hold you down. But we, above all else, had to keep you alive. And, when games and bribery didn't work, we had to hold your little body down even though it killed us. I remember the day you stopped screaming. The day you went back to school, less than a week after diagnosis, and read a book to your class about diabetes. I remember the note you wrote me two days after you were diagnosed:" I'm really glad your my mommy. When can we go ice skating again? I bet I'll be really good." You saved me. You were ok long before I was. And, your strength gave me strength. What resilience children have. You became my hero.<br />
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Watching your child hurt, and being powerless to protect them. This is devastating. As your mom, my job was to protect you. And, I couldn't. Like so many other moms I know I have looked back. I know there is no point. I know rationally it is not my fault. But, that doesn't stop the thoughts...I know now I had undiagnosed celiac during my pregnancy with you...did this contribute? I put you in daycare when you were six months old...was this where you caught a virus that could have caused it? And, now...new theories that weren't around twelve years ago...I gave you gluten in your first year of life...this could have caused it. I know these thoughts are futile. Ridiculous. Pointless. They rarely enter my conscious now. But, tucked away, they are still there. And, I'm sorry. I am so sorry that I could not protect you.<br />
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Five years. Why did this anniversary bother me more than any other since the first? I was so relieved to go to bed that night. So glad the day was done.<br />
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Maybe it is because it has been five years and there is still no end in sight. Five years ago, I was still naive enough to believe a cure was coming soon. I still have hope it will come, but I now know that "five or ten years" is a joke in the diabetes community. They've been promised a cure in "five to ten years" for decades. Maybe it is because now that you have had diabetes five years, I feel this time bomb ticking louder....complications....more than anything else time allows complications. You will have had diabetes ten years by the time you are seventeen. I panic when I even think about that. I know that luck has so much to do with developing complications. I have seen people who have worked so hard still get them. You will have had diabetes twenty years when you are only twenty-seven. Twenty-seven. I was newly married, hadn't even finished my medical training. And, by that time you will have had it twenty long years. And, perhaps the scarier part is that the days that I have any control over the one thing that could prevent or delay those complications is marching closer. You will likely leave my house in six years. Already, I am losing control over helping you to manage your blood sugars. And, I should be. As much as I wish it wasn't, this is yours. And, to succeed at all you must own it. Gone are the days when I could feed you your precisely measured meals and have the luxury of you wearing the dexcom 24/7. These days are about compromise, and fighting the effects of hormones. They are about you becoming the young adult that you will be. And, you will be an amazing one.<br />
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Five years. Five years of sleepless nights. Guilt for feeling anger as yet another night is interrupted by beeping machines that intrude into much needed slumber. Guilt for having days that I am just tired of it all. And, what right do I have when you must live with it forever? Five years of explaining to people who don't get it. Five years of hearing upsetting comments that aren't meant to be. Five years of refraining from screaming at yet another person who stares at your pump or dexcom, or asks "what is that thing on your arm?" And, yet five years is just a drop in the bucket compared to the journey you must take.<br />
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I hate it. I wish I could take it for you. It is not fair. You did nothing to deserve this.<br />
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But, you are going to be ok. And, because of that I, too, am going to be ok.<br />
<br />
For every single negative that diabetes has brought, there have been so many absolutely amazing positives. It has changed you. You are the person you are because of it. Your strength astounds me. Your empathy amazes me. It has connected us to a community that we otherwise would never have met. A community that envelops us and supports us. A community filled with super-hero children with type 1, and their un-sung hero siblings. A community of adults with Type 1 that show me that you will be ok. Yes, you may struggle. Yes, you may get complications. But, you will have support. And, that support will carry you. You have friends in Texas, Wisconsin, California...and you support each other. You would never have them if not for diabetes. You have saved your dad. He was alone and because of you he is not alone anymore. He has found what he was always searching for. And, because of that, I know he, too, will be ok. Your journey has led us to work that we never would have done otherwise. Important work. Work that needs to be done.<br />
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And, better times are near. The Bionic Pancreas will change your life. Yes, you will still have to wear so many things attached to your perfect little body. You will still have the pinholes and skin breakdown. But, the emotionally exhausting part---the thinking about diabetes every single moment of every single day....it will go away. An amazing man with an amazing team is developing an amazing little computer that will do this for you. And, he too is my hero.<br />
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And other amazing concepts like encapsulation...they may be a reality.<br />
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So, five years. Five years since diabetes came to live with you. You've lived well. You've traveled across the country, hiked mountains, rafted down rivers, rode across deserts on horses. You've left behind the elementary years and are thriving in middle school. You are exactly where you are supposed to be despite diabetes. You have thrived. Five years, and I couldn't possibly be more proud of you.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com3tag:blogger.com,1999:blog-5198789953732514022.post-88957917987694248862014-09-04T14:12:00.000-04:002014-10-09T12:07:12.312-04:00Diabetes on the Back-BurnerI haven't blogged in awhile. I mean a looonnngg while. I've been crazy busy. With Jessica getting older, I have grown hesitant to share too many details of her life. But, mainly I haven't needed to. And, that is HUGE. I started this blog as a place to dump all of the emotions I felt with a newly diagnosed child. There are still bad days. There are still many sleepless nights followed by long days at work. There are failed and painful sites, insulin that goes bad, numbers that won't go down (or up) despite us doing what should work. There are added in tween additions such as eye rolls. But, overall everything is ok. It is ok. We are ok. This is our normal. Diabetes, although still a part of every single day, has been more on the back-burner.<br />
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The biggest reason it is ok is our support. We had another terrific conference at Children With Diabetes in July. Jessica shared that is is the only week she can truly relax without worrying who sees her site, or who finds out she has diabetes. She is normal there. And, normal to a 12 year old is priceless. But, as opposed to last year where that sense of support ended for her the day we left the conference, this year she is staying in touch with her friends via instagram, facetime, and texting. It has made a crucial difference. As a parent, it makes me tear with happiness to know she has this.<br />
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Sean has it too. His entire face lights up when he tells me he has heard from one of his adult with Type 1 friends. He is connected. He is supported. He is not alone.<br />
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And, that makes all of the site changes, highs, lows so much better. Because, we are not alone.<br />
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But, I want every patient to feel this way.<br />
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I have the huge privilege of teaching medical students. This week during one of the classes they were to think of ways a diagnosis of Type 1 might affect patients, and what they could do to make that better. I went from group to group listening to their discussions. "Well, can they get a pump? If they get a pump then it will be easy." "How old are they? If they are an adult then it is probably easier." "I would tell them they just need to take their insulin and check their blood sugars and they will be controlled." I cringed. And, then I reflected. They are students. Most are fortunate to have never experienced a chronic disease. They have absolutely no idea what it is like to live with one. How can they possibly imagine? How can they truly offer support? And, even as they become physicians, will they gain enough experience to understand? I take pride in always having been an empathetic medical student and physician. My heart would bleed for patients. But, until I walked this walk, did I truly understand? Of course not. And, do I understand what this experience is like for each unique individual living with Type 1? I do not.<br />
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Those living with Type 1 need each other. There is so much physicians offer, but there is so much they simply cannot offer. I have seen firsthand, that the diabetes community can offer that which as a specialty medicine cannot. We know the truth. It is not easy with the pump. It is not easier for adults. It is not easy for anyone. It cannot be "controlled"...only managed.<br />
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That does not mean as educators, we should not keep trying. I showed the students blogposts during class. I watched them as they read the excellent CandyHearts post "She Tried."<br />
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Did it make a difference? I don't know. I'd like to think it did. <br />
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They are amazing students. They mean well. They want to help. They cannot be blamed for their lack of knowledge or experience.<br />
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We can do better as educators. And, I see huge positive changes. This year the first year students are serving as patient navigators. They will be paired with a patient and attend all their appointments with them, and truly get to know them. This can only help.<br />
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I wish for every patient what we have found. An amazing healthcare provider for Jess, and a community for her and Sean that sustains them. Because, it is this that lessens the burden, and allows at times for diabetes to live on the back-burner.<br />
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<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com5tag:blogger.com,1999:blog-5198789953732514022.post-22461940498889360392014-05-17T13:03:00.001-04:002014-05-17T13:03:57.433-04:00Running With Diabetes<div class="separator" style="clear: both; text-align: center;">
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When I turned 40 a good friend introduced me to running. In a former life I had been a soccer player, and I can't say I was particularly interested in running. I thrived on competition and teamwork, and running seemed boring and pointless. But, I trusted this friend and so I gave it a go. And, I was hooked. I loved what running gave me. A time to reflect...to challenge my body...to feel healthy and strong. I am not the fasted runner, nor have I any major claim to fame. I've done half of a half marathon with the friend that introduced me to running, and a handful of 5Ks. My running has been derailed by work, my daughter's brain surgery, and my own lack of motivation. Yet, I have always returned.<br />
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Recently, Jessica has joined me. I love having her as a running partner. I love having the chance to introduce her to something that I have grown to love. I love that unlike team sports, she can easily run throughout all life stages. It gives us a time to be alone, to talk, to be healthy together.<br />
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Some runs diabetes is only in the background. The bag of skittles clutched in my hand is the only reminder that it is there. As our distance has increased I now bring her Dexcom along with the bag of skittles. Sometimes she has a hard time telling when she is low when her heart is already pounding from exercise.<br />
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I'm learning to be able to tell her blood sugars by her run. The slightly slower pace when she is high. The days her blood sugar is perfectly in goal and she zooms past me. I'm learning what works and what doesn't work.<br />
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Today what I tried, didn't work. She started at 146 with a flat arrow (steady blood sugar.) I gave her skittles and chocolate milk and we headed out. Half a mile in and she was 86 and an arrow down. We slowed to a walk and I gave her more skittles. We ran again and a mile later she was dragging. The dex showed 68 and flat. More skittles. More running and the dex stayed in the 60's. We both figured it was just lagging with the amount of skittles consumed. I could see the disgust with diabetes on her face. "Remember Sebastien Sasseville and Korey Hood," I told her. "Is Sebastien still running?" she asked. I told her he was in fact still running...I mean it takes awhile to run across Canada from coast to coast. I reminded her that Korey had run the Boston Marathon with ridiculously high blood sugars and ketones. "Diabetes can't stop you," I told her. We made it back home...it was not a great run. She was upset by the 2.86 miles. We normally do at least 3.12 (the kid likes to say she ran a 5K.) The Dex was beeping and alarming the whole way home. We walked in the door and the fingerstick showed a blood sugar of 71.<br />
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I don't know what it is like to run with a blood sugar in the 60s. I sometimes have off days where it just doesn't feel good. Somehow, I doubt these off days compare to what it feels like to run in the 60's or 300's or more.<br />
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I told Jess I was proud of her. She is strong and brave. Tomorrow we'll try a temp basal an hour or two ahead. I reassured her I always have more tricks we can try. And, if we run out of ideas we have people to ask.<br />
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It's a new experience, this running with diabetes. But, we're up for the challenge.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com2tag:blogger.com,1999:blog-5198789953732514022.post-81058060732508026602014-05-08T13:42:00.000-04:002014-05-08T13:42:09.487-04:00Twenty-Five Years<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoaIQDC5iZl5Pdna4IJgM1xsDUb1n0mlBjsB6I1CRBNh_ApJN11y61V_5MK_aCFomTUGU9Kk-fNK4ZCce_AN5wXhtAEu4gHPYvHQVSQf99BRznejBe4VpOuQ_4kRHSuqo5dlJvspvIlQ/s1600/sean.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoaIQDC5iZl5Pdna4IJgM1xsDUb1n0mlBjsB6I1CRBNh_ApJN11y61V_5MK_aCFomTUGU9Kk-fNK4ZCce_AN5wXhtAEu4gHPYvHQVSQf99BRznejBe4VpOuQ_4kRHSuqo5dlJvspvIlQ/s1600/sean.jpg" height="266" width="400" /></a>This weekend marks twenty-five years that my husband has lived with Type 1 diabetes. I have known him for nineteen of those years. I have witnessed firsthand the daily struggles, the highs, the lows, the WORK that is involved in living with this disease. I've seen the emotional burden. I have watched him cry when his own daughter was diagnosed at the young age of seven. I saw the misplaced guilt that consumed him; the absolute devastation that he knew what she would live with. <br />
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But, I have also witnessed his strength, perseverance...his spirit. I have watched him graduate from medical and graduate school without one accommodation for his diabetes. I have watched him work inhumane hours during residency...saving patients' lives all while his blood sugar was in the 200's or 300's at times. I have seen him sit and sweat while he quickly treats a low in order to get back to work. I have seen the syringes, the thousands of strips, the pump and dexcom changes. I have witnessed bravery and triumph. I have watched him travel desolate places. I have seen him become the most amazing father my children could ever have asked for. I have watched him become a hero to my Type 1 daughter. I have seen him LIVE with Type 1.<br />
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Lately, I have seen his hope. For many years he was hopeless. He had been promised a cure in "5-10 years" at diagnosis. We've all been promised that. And, it did not come. A horrible feeling to realize that there is no end in site. This disease is so consuming. He continued to live and thrive, but I remember my frustration when my daughter was diagnosed and I looked so desperately for that cure. I combed the research and would excitedly share possibilities with him. He did not share my excitement. He had already lived through the disappointed and acceptance that a cure was not here.<br />
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But, lately his hope is back. He once again believes there may be a cure. But, more importantly, he believes for the first time that there will be a radical change in his life. I will never forget his excitement and absolute idolization of Ed Damiano and his bionic pancreas. It has given him motivation, and the belief that one day soon things will be better, not just for him but for Jessica and so many others too.<br />
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He is working harder then I have ever seen before. Eating healthy, exercising, losing weight. He excitedly texted me earlier this week...his A1c was 6.8---under 7 for the first time in awhile. I could hear the pride. He was so excited. I watched him open the envelope from his endo with his lab results. "Here are the results of your recent tests. The statin has worked very nicely. Please stay on it." SERIOUSLY???? That is it???? No mention of his A1c which had been over 7 and is now 6.8...no acknowledgment of any of the work that had gone into these numbers. I was disgusted. Furious. He was not. He spent years looking to his health care provider for support. Recently he realized it would never be found there. But, he has found it. In the form of Children With Diabetes and the DOC. He feels connected for the first time...he no longer feels alone. I watch his happiness every time he talks to the adults with T1 that he has met. They are his support. They are what he was always looking for.<br />
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This weekend marks a twenty-five year journey. The battle of one man against a ruthless disease. It marks a victory. He stands strong with no complications and living an incredibly full and happy life. He symbolizes hope....what I hope for my T1D daughter, and all those living with T1D. Some of it is luck...I have seen those who have worked so hard still develop complications; some of it is being born in the right time and place...so many still die without access to insulin even today; but a huge part of it is work. His work. And, that is what we will celebrate this weekend. Twenty-five years of hard work is worth a celebration.<br />
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<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com4tag:blogger.com,1999:blog-5198789953732514022.post-86540838759896096312014-03-30T21:09:00.000-04:002014-03-30T21:09:46.886-04:00Going Tubeless and Other Rambling MusingsAfter over three years on the One Touch Ping, she decided to try a switch. We love Animas---their customer service is out of this world. They rescued us in Colorado when her pump sounded like R2D2 and then died. That pump went with us everywhere. It changed her life and mine. I will forever fondly remember that green One Touch Ping.<div>
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But, then she grew up. She decided that, for now, she doesn't want to display her diabetes. This doesn't mean she will always feel this way. And, it is certainly not how we have "raised her." But, I respect her decision. And, if I were starting middle school again I think I would probably make the same one. It is so hard to be different during these tumultuous years. And, she feels this way only at school. At JDRF events, out in the public, on vacation...she displays her diabetes proudly. But, within the walls of the school she feels safer not putting her diabetes on display.</div>
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And, thus the battle of the tubing began. She tried every possible way to hide the pump. Spibelts showed underneath shirts. Pump bands did too. Skinny jeans were popular. It was a daily fashion battle.</div>
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I suggested the Omnipod. I had originally gotten her a demo three years ago, thinking it would be the least intrusive pump. She had left the demo on less than ten seconds before ripping it off and throwing it on the soccer field. But, the new version is smaller, and she is bigger.</div>
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At first she was resistant, but long story short, she decided to give it a go for 1 month. We had our ups and downs. It's not perfect. On vacation it let out a high pitched alarm that wouldn't stop in the middle of the packed swimming pool. She was horrified. I thought that would be the end of the Omnipod, but she kept wearing it. Their customer service isn't Animas, and I wasn't impressed with their tech support. We miss the remote. And, HAVING to change it every three days (it alarms if you don't) is a bit of a pain. But, from a medical perspective she seems to have better insulin delivery and way less kinked site problems. And, she can wear whatever shirt she wants. And, so she has decided to stay on it. And, her dad decided to switch too.</div>
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We are so lucky. At a recent JDRF event I sat by the grandmother of a child about Jess's age with Type 1---diagnosed about the same length of time. Sean got out his Dexcom and I saw her glance. She had never seen one. I showed her all the features, told her how much it has helped us. She called her daughter over (the mom of her T1D granddaughter.) She, too, had never seen one. They were amazed by the technology. Jess and Sean have had it for 4 years. It is not new technology. I completely respect people who do not want the technology. But, to have never been offered it, I find that unacceptable.</div>
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It is hard to believe I am now the mom to a T1D middle schooler. It is so different than elementary school. Gone is the support from the teachers in terms of reminding her to check before tests. We have had so much frustration with her 504 that we have all just given up for now. The school will "allow" her to check and delay tests if she is high, but Jess (at age 11) must do it all on her own. Even with standardized tests, no one will prompt her to check and defer the test if she is not in goal. It has been exasperating, but the school won't budge. It is amazing that within the same district, in elementary school the teachers were so involved, and would allow her to write her blood sugar on the corner of the test so there was transparency. In middle school they consider it a "medical issue" so the teachers cannot be involved at all. Jess must decide to check and then pull out the nurse's pass if she is not in goal. Of course she doesn't do this. That would draw attention...the very thing she is trying so hard to avoid. If we hadn't had such an absolutely phenomenal elementary school experience with nurturing teachers and incredible principal it wouldn't be so hard. But the contrast has been very difficult.</div>
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I will forever remember the lecture I went to at CWD where they talked about children processing diabetes. When adults are diagnosed with a chronic disease they process it and move on. For children, every new developmental stage means re-processing and figuring out how it fits into their life. What having diabetes meant to Jessica at age 7 is very different than what it means to her now at age 11. I remain so proud of her. She doesn't check or pre-bolus as often as I wish she did. But her HgbA1c's have been excellent. She wears her pump and her Dexcom. I have changed my expectations...taking insulin and wearing the Dexcom to me are non-negotiable. I don't care how she takes her insulin (she has decided to remain on a pump) and I won't nag her to check her blood sugar as long as she wears the Dexcom. I think we are still in a good place.</div>
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At the recent gala, we heard the heart-wrenching story of a mom whose beautiful daughter was recently diagnosed. I so remember the raw pain of those days. We have come so far. I hate that Jess has this. But she is living well with it. Life is so much better than back then. She has handled this unchosen road with such grace and strength. And, that is the biggest thing that has made it easier for me. Like other T1D children she is a hero...they all are.</div>
Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com3tag:blogger.com,1999:blog-5198789953732514022.post-29479840614223883342014-02-25T21:38:00.000-05:002014-02-25T21:38:00.243-05:00Hiding DifferentShe hates being different. I would have been the same way.<br />
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Comments that may just be ones of interest, to her feel so intrusive. I don't blame her.<br />
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I will do anything to protect her, to help her, to ease this burden she must carry.<br />
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Tonight the omnipod rep came. This is my idea of a possible solution. $199 for the "cut the cord" program is a small price to pay for my daughter's happiness. It can be hidden better than her current pump with its cord and the pump bands to carry it.<br />
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She was a good sport. She's willing to try it. But, in her eyes I saw the truth. There is no good solution. She is tired of it all. It is but yet just another gadget for her to wear and try. Another needle insertion. Another intrusion to her body.<br />
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Diabetes can't be hidden. It is always there. No matter how much she tries, she is different.<br />
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I can't fix this. I can only walk beside her, "carrying" her when she needs it and cheering her on the rest of the time.<br />
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She doesn't believe there will be a cure. It took only 4 years for her to lose hope.<br />
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I believe she will be ok.<br />
I believe there will be a cure.<br />
I believe someday she will stop hiding different and make peace with this monster she must share her body with.<br />
I will never stop trying to ease the burden, trying to find better ways.<br />
I love her endlessly, even more so because she is different.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com0tag:blogger.com,1999:blog-5198789953732514022.post-63032769004549663372014-01-29T18:45:00.000-05:002014-01-29T18:45:06.911-05:00Trying to Make a DifferenceEver since Jess was diagnosed I have been looking for ways to help the T1 community. I've done the usual fundraising with JDRF, became a JDRF mentor, had the huge honor of becoming faculty for Children With Diabetes (best organization EVER!) But, I kept looking for ways to use my medical background to make a difference. A little tricky because I am not an endocrinologist. I'm a family doctor. My T1 hubby (also a family physician) and I finally have an idea. And, we are going for it and turning it into research. Part of that idea involves looking at many comments from Type 1 diabetes blog posts.<br />
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I was unprepared for the emotional onslaught of reading so many comments at once. I routinely read blog posts and skim the comments. But, I have never spent hours looking at all of them before.<br />
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It is heart wrenching.<br />
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There is no chronic, lifelong disease that comes to my mind that is as emotionally and physically challenging as Type 1 diabetes. These comments detail that with their raw honesty. <br />
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My heart aches for my husband, my daughter, and the entire Type 1 community.<br />
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And, people don't "get it." These comments demonstrate the isolation living with this disease can bring.<br />
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It is exhausting. It is constantly there. The multiple blood sugar checks, the math every time you eat, the highs, the lows, site changes, dexcom changes, injections...<br />
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So many emotions....burnout, guilt...the highs...the lows....<br />
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I am but a caregiver of a beautiful girl who is becoming a young woman, who happens to have type 1. I hate that she has this. I hate that anyone has it.<br />
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I see in her how isolating it is. I hear the intrusive comments fellow classmates make. I see how she hates being different. She is so tired of the highs and lows. And, it has only been a bit over 4 years.<br />
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She told me recently that she knows that I love to go on vacation, but that for her the week at Children With Diabetes is her vacation. She told me it is the only time she can truly relax. She doesn't have to hide in the classroom checking her blood sugar, hoping no one will see. She doesn't hide her sites and pump, but wears them proudly like badges of honor. She is surrounded by literally thousands of people who she knows can keep her safe. On the one hand, I am so thankful she has this respite, and on the other hand I hope desperately that what she tells me is not true. I can't bear the thought that she truly relaxes only one week a year.<br />
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All I can do is to keep trying. Keep fundraising. Keep researching. Keep helping. And, keep hoping. Hoping that someday the elusive cure is found.<br />
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<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com2tag:blogger.com,1999:blog-5198789953732514022.post-66669802555783314322013-12-31T15:39:00.000-05:002013-12-31T15:39:56.324-05:00PurgingI'm ready to purge 2013. Sure, there were great times; we have so much to be thankful for. But, to be honest overall you could say it sucked. Sucked is relative, of course. We end it happy and healthy, and for that I am incredibly thankful. We hands down have the most amazing friends and family, and that was more evident then ever this year.<br />
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Courtney's brain surgery was hands down the worst thing I have ever been through. I barely made it through. My family, and dear, dear friends carried me through...basically pulling me to the other side. I know it was the lack of control. I feel I can control diabetes, even though that obviously isn't true all the time. And, even though I put Jess to bed every night and there is some fear of what will happen, it isn't on the same level as watching Courtney fall asleep to anesthesia and then leaving her. Leaving her to have her brain cut open and part of it removed, to have her lose a vertebrae forever. Because of my profession, knowing every single horrific complication that can occur, and having nightmares about it for weeks before the surgery. My poor dog Lilly put up with many 2 am visits where I held her and simply cried and purged my terrifying fear. I still get tears now as I write thinking about how horrible those nights were. Yet at the same time, I have never felt so supported. And not just by my poor dog Lilly. My girlfriends were amazing. I am extremely selective with close friends. I just don't have the need or patience for anything but the real thing. They saved me. Brownies, daily texts, phone calls during which I must have driven them insane telling them my fears over and over again. They were there in the waiting room when I came out after leaving Courtney behind. One flew in and out just for the surgery. Being there is not easy. It is not fun to be friends with someone who is facing something so terrible. I know...I've been friends with someone through the worst. But, yet they were there. Both my and Sean's family were there. We took the worst out on them. And, yet they were just there. Jess was there. She dealt so gracefully with the shift of our attention. Seeing her those brief times while I stayed with Courtney in the hospital were a saving grace. She was my ray of sunshine. Before we left, our work family sent us with so many things we never would have remembered. I worked up to and including the day we left for the surgery. I never would have remembered to pack food, drinks, books, games for Jess and Court. Afterwards, we were bombarded with the giving spirit of so many. Meals arrived. Someone payed our Believe in Tomorrow bill. Facebook messages during and after which meant so much. I was simply humbly amazed by humanity. People can say there is too much evil in the world, but there is also so much good. I will never, ever forget all that people did for us this year.<br />
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And, then I was diagnosed with celiac. After the diabetes and brain surgery I completely blew it off as "nothing." I didn't mourn it, didn't process it. I mean, after the hell we had lived through this was a cakewalk. Except, it turned out it wasn't. As a Landshark and Taco Bell loving girl this was a lot to adjust to. It turned out it was way harder than I thought. Back to reading every label, but looking for more than just the carbs. Social get togethers became stressful. Guilt---this was yet one more thing for our friends to have to deal with. Aren't we fun to have over? Two Type 1's and a celiac. Oh joy! And, unlike the brain surgery this has no end. I will never again taste the delicious rolls at one of my favorite restaurants, a great beer, or some of my favorite desserts.<br />
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And, so I am purging this year.<br />
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I spent the past couple of days that I had off work gutting my closet, my bathroom drawers, painting my bathroom. Bags of trash out. Bags of clothes for goodwill. It wasn't until today that I realized what I was doing. Purging the old. I'm ready to start new. I'm ready to get healthy again. The stress of the brain surgery and the disruption of life while Courtney recovered derailed my 6 mile runs. Being diagnosed with celiac and then trying every gluten free version of cookies, crackers, candy put on pounds. I'm ready to purge them too.<br />
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So, goodbye 2013. I am so thankful to end it with both my daughters healthy. I am so thankful to end it with life filled with amazing friends and family. I am so thankful to end it having seen so much good in the world.<br />
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Tonight I am lucky enough to celebrate and bring in 2014 with friends who have stuck with us since before Jess was diagnosed. We will purge 2013 together.<br />
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Tomorrow is for new beginnings. And, a beautifully painted bathroom.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com0tag:blogger.com,1999:blog-5198789953732514022.post-88065172207026976562013-12-29T23:12:00.000-05:002013-12-29T23:12:27.412-05:00Don't Let Your Guard DownLately, we've been in a comfortable diabetes rhythm. Jess and Sean have been doing great. We've been at this quite awhile now with Jess. The emotional burden has lessoned. We are used to Jess hating diabetes at times. We are used to the daily impact it has on our life. It is always there, but at a level that most days is on the back burner.<br />
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And, we let our guard down.<br />
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Jess was high last night. Not crazy high, but in the high 200's despite multiple boluses. I was on call and so my energy was focused on the patients I was caring for. There was nothing major going on with Jess and so I didn't focus on it.<br />
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We all slept in and got up barely in time for the girls to go to brunch with my parents. I don't even remember what Jess was before she left. But, it couldn't have been too high or she would have said something and I would have noticed.<br />
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After brunch she was in the high 300s. Not terribly abnormal for Sean or Jess on occasion to run that high after an all you can eat brunch. Not ideal, but we so rarely do all you can eat buffets that it is not alarming. We usually correct and move on.<br />
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Jess was due for a site change and that was done.<br />
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Throughout the day she stayed in the 300's despite repeat boluses.<br />
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Then this evening. Pow. High 500s.<br />
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We should have pulled the site and given a shot.<br />
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But, there is a sense of pride. And pride can sometimes breed stupidity. You see, she hasn't had a shot since getting the pump over 3 years ago. Giving a shot has turned into a bigger and bigger deal the longer we have gone without doing it. Stupid, really.<br />
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We bolused one more time. Thirty minutes later---critical high. Above 600. Haven't seen that since diagnosis night. Small ketones. Didn't have those diagnosis night.<br />
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We realize our mistake and the acuity of the situation. We pull the site which is kinked- no surprise there. We have turned into one of those nightmare patients that they present to you before you get your pump. You know, the ones that demonstrate how things can go so badly so quickly on a pump. The ones that as they present them to you, you sit there and think "That will never be us. We would never let something that stupid happen."<br />
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I draw up the insulin into a syringe. I haven't done this for over 3 years. I am surprised when it feels normal, comfortable, and in some sick way I don't have time to explore, like a long lost friend.<br />
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Jess freaks when she sees the needle. But, we get it done. I am likewise surprised how comfortable it feels to give her a shot. As I write, I realize that I gave so many that first year that it must be like riding a bike.<br />
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I am surprised by how I feel no guilt. We screwed up. And, that is all it has to be. She's back to the 300s now, and will be back to normal before I go to bed. I remember when much less than this would lead to me blaming myself and filled with guilt. I don't know if it is good or bad that I feel none. Diabetes is a monster. You can't let your guard down. But, we are not perfect. Most days we nail it. But, we can't do it every day.<br />
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And, this will even sound worse. As the crisis passed I realize I am glad in some small way it happened. We gave a shot. We won't hesitate now to do that again. We corrected a blood sugar in the 600s with ketones with no help but our own. Jess learned how quickly problems can happen, but how quickly they can also be fixed.<br />
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And, we all were reminded that we cannot let our guard down.<br />
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<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com1tag:blogger.com,1999:blog-5198789953732514022.post-25918729563806273222013-12-23T20:09:00.000-05:002013-12-23T20:09:58.100-05:00I Didn't Know ThatLong day of doctors' appointments today for both you and your sister. Left at 8 am and got home at nearly 7 pm. I'm tired. I know you and your sister are too as you both fell asleep on the car ride home.<br />
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You were so quiet and nervous on the way down. You were so sure that your HgbA1c was going to be "terrible." It didn't matter what I said...you weren't listening. You wouldn't eat breakfast. You have this theory that if your A1c is taken when your blood sugar is in goal then it is better. If your blood sugar is high when the A1c is checked, you swear it is higher. You say you have been collecting data, and you are sure this is a proven fact. I have tried to point out that the differences have been on the order of 0.2 which is not likely to be statistically significant, but even when I think I am explaining this in 11 year old terms, you nod and tell me you just know you are right. Hence, no breakfast today.<br />
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I watch you get weighed and measured, and your blood pressure taken. So normal to you now that you know the routine. You prick your finger and give the blood for the A1c. We are then taken to the room, and I see you glance back at the machine, hoping it is done and you can see the number.<br />
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You sit waiting for your diabetes provider. So quiet. So nervous. You almost always bolus off the dexcom, so there are only two sugars a lot of days in your meter. The 90 day average based on those is high, and thus you are sure the A1c will be too. It is so new to me to see you check your 90 day average and process what it means.<br />
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Your diabetes provider walks in smiling. She asks you if you know what a perfect A1c is for someone your age. She says she hates to use the word perfect, but that is what it is. You shake your head and she tells you it is 7. And, she hands you the paper with your A1c written on it. It is 7. I see the relief wash over your face. You shine a humongous smile. This one is yours. I have done the nights, but that is it. She knows this, and she praises you so much I honestly get tears in my eyes. I am so immensely proud.<br />
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I try to sit back and let the visit be between you and her. I learned so much.<br />
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There is a boy in your classes. He calls diabetes diaBUTese and tells everyone it is an infection of the butt. I didn't know that. Your amazing diabetes provider tells you he is obviously insecure about something, and goes on to make you feel better about it then I ever could.<br />
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You try to sit with your chin in your hand all the time. This way when you treat your lows no one can see. I didn't know that either.<br />
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You sometimes ignore your dex alarm in class and act like you don't know what it is either. Then you pretend to reach into your bag to get something out, while you discretely look at it and turn it off. I didn't know that.<br />
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You still feel some of the teachers don't understand your 504, and you are ignoring it at times. Taking tests when high as you hate feeling the teachers are annoyed with you. That, I knew.<br />
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You get low most days after gym. I didn't know that. And, that speaks to the control I have relinquished. Your provider is proud of that. She tells you that because you are doing all of this on your own and doing it so well, it will make it easier for me to tell you that you can go out with your friends alone, or spend the night. She is right.<br />
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I watch as you and she come up with a plan for what to do about gym. You discuss it as two adults, deciding on doing a temp basal. I watch as she asks you if you need her to show you as a refresher how to do it. "I got it," you reply. "I do it all the time."<br />
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You are right, kid. You got this. Four years in and you have grown so much it simply blows my mind. I hate that you have had to. I would give anything to take it from you. But, I also know that it is you. You are who you are, and who you will become, because of this.<br />
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At the end of the visit, your provider asks if you would consider being a mentor. You smile..."sure." She also takes you to see the endocrinologist (she is the CDE & nurse practitioner). She brags to him about your A1c and your self management. You are so proud. I wish I could bottle up all of those feelings for you and give them to you when you come home beat up from a school full of kids and adults that just don't understand. <br />
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You are my mentor. I hope you are your dad's. I don't know that I would be able to do what you do. I don't think I could do it as well. I thought I knew how amazing you were, but...I didn't actually know that either.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com2tag:blogger.com,1999:blog-5198789953732514022.post-75257715234521920852013-12-12T20:33:00.000-05:002013-12-12T20:33:16.307-05:00Pausing to ReflectWe just finished your site change. There was no screaming, crying, begging, or negotiating. And, it suddenly occurred to me that I actually couldn't remember the last time there was. We didn't use EMLA numbing cream. It didn't take more than 30 seconds. As I suddenly realized this, it made me pause with wonder at how far you have come.<br />
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I vaguely remember when you were first diagnosed. You had just turned seven. Your fingers were so tiny. You were so little. My heart was broken, and it would crack further every time we checked your blood sugar. You would scream and cry and we would have to hold you down. And the insulin shots. It still causes my heart to twinge to think about the first of those. We would literally have to straddle you and we would be crying with you as we gave them. I still hate those days. <br />
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I will never forget the pride that I felt less than a year later when you gave yourself your first insulin shot. How, so quickly, you took over checking your own blood sugars and giving your own shots. I remember at the time it seemed like eternity. That first year each day dragged on so. <br />
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And, then we started the pump. And the Dexcom. The screaming, crying, begging, and negotiating began again. I so hurt for you. Everything in diabetes looks and sounds so scary, even to adults. Needles, the big click as the site goes in, the worse click upon insertion of a dexcom. Terrible things done to your body over and over again, and there is no end. So many fingersticks a day. <br />
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Today you accidentally held out your pinky to me when I went to hold your hand. We both realized, and you joked that you hope when you get married you don't hold out your pinky when they ask for your hand. You can joke about it now.<br />
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I hear you singing as I write this. The site change a mere pause in your evening. It used to take up your entire evening.<br />
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Lately you are the one who reminds me that it is time for a site change. You used to stay quiet, hoping we would forget.<br />
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You focus on other things now...you are so aware of your averages. You tell me with disgust that you don't think this A1c will be "good." I remind you there is no "good" or "bad." It is simply a tool to tell us which direction we need to go. You nod, but I know you aren't really listening. You are becoming in charge of your diabetes. And, you are deciding how you will view things like averages and A1c's. I only hope that we have done our job and helped you to be as well adjusted as you can be.<br />
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I wish I could go back and tell myself that terrible diagnosis day that things ARE GOING TO BE OK. I can't believe how far we have come in four "short" but forever years. You simply amaze me.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com1tag:blogger.com,1999:blog-5198789953732514022.post-87972567850929947762013-11-16T10:05:00.001-05:002013-11-16T13:29:37.255-05:00Middle SchoolMiddle School. So many new changes. If you look at the surface, things have gone great. Jess rocked straight A's. She's healthy. I think she is happy and well adjusted.<br />
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But, there are things I am so tired of. The 504 ordeal. I love it. I hate it. Getting the teachers to understand it is a fiasco in itself. Jess is so sick of having to make up tests as she can't take them at the time as her blood sugar is not in goal. How can a post-prandial blood sugar be in goal???? We are just not that good. I know intellectually all the tricks. But pre-bolusing at school for lunch isn't something done regularly. And even with pre-bolusing and doing a low carb breakfast, she often spikes. We've adjusted I:C ratios, we've adjusted basals. Sometimes it works. And, often it doesn't. And, that leads to the make up test ordeal. Teachers staying after school is not an option we've been given. So, Jess has flex time (study hall) 2-3 times a week in which she is to try to make up the exams (if all the stars are aligned and her blood sugar is in goal.) That has led to exams being made up 2 weeks after the unit has been completed. They have moved on to new material. Is this really protecting her rights??? How many of us remember material 2 weeks after we learn it? And, she hates it. I honestly don't know that she doesn't hate it more than she would hate just not doing well. There are just so many more tests and teachers in middle school. It is so different than the amazingly supportive environment she was enveloped in during elementary school. She might have up to 4 exams in one week or more....that is a lot to try to make up during limited time if her blood sugar is out of range. And, I know high school is sure to be worse. But, she is succeeding. She has above a 97 average. So, I guess on paper this 504 is working. But, so many days she gets in the car and says "I hate diabetes. I couldn't take my math test today. Now I have to make that up too. I have more homework as I can't get it done in flex like the other kids." I hate that she has to deal with this.<br />
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And, the diabetes secret is new. On this she seems so conflicted. She doesn't want anyone to know. She changes in the nurse's office for gym so people don't see her dexcom and pump. But, yet, she was this years JDRF Walk Ambassador. She texted all her friends to tell them to wear blue on World Diabetes Day, but yet she doesn't tell them the reason she is asking them to wear blue is that it is World Diabetes Day. She tells me one day that her computer teacher was talking about how her son has Type 1. Jess tells me she raised her hand to tell the computer teacher that he was not alone, and she had it too. I question "I thought you didn't want anyone to know." "I don't," she replies. "But supporting her seemed more important than keeping it a secret." I am so proud of her. I know she is just exploring who she will be as a young woman with diabetes. And, that is ok. Up until now we have made the decision for her that it will not be a secret. She will be an advocate. She will be an inspiration. She will be a source of support to others. But, she is not a little girl anymore. And, she must now decide who she will actually be.<br />
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There is more tension surrounding the diabetes. Not a lot. But the undercurrents are there. Some days she may only check a blood sugar twice a day, rather than the 10 or more checks she has done in the past. She has had free access to her halloween candy and has eaten many a piece although she was already high. But, the majority of the time she makes good choices. I will not micro-manage or try to control this part of her life as long as she is not in danger. She has the dexcom...the data is good that it is accurate. If she only checks to calibrate it twice a day, I am ok with that. She boluses for the halloween candy and so I am ok with that too. She cares about her HgbA1c. She wears her pump and dexcom. She boluses. In my mind these are the big things. During these next years, as long as she is doing these I am not going to try to control her every move. I have seen too often what that can lead to. I do not want her to feel so frustrated with the diabetes and how we treat her, that she rebels. Stops wearing the pump, refuses to check at all, stops bolusing....I have seen this as a physician, I have heard many stories at CWD. These are difficult waters to navigate. I am not sure I am doing it right. But, I am doing what feels right. I know my child....she is a lot like me....and if she is forced, she will rebel. So, I will focus on working with her. Fighting only the big fights. Telling her when I think she has done well. Holding back comments when I think she has not. Have I never eaten something unhealthy when I should not have? Have I not had one extra margarita when I have already had too many? I'm not perfect. I certainly don't expect her to be. And, luckily, we have an amazing health care provider who doesn't expect Jess to be either. Jess respects her and listens to her. I take comfort knowing that even if we reach a point where Jessica does not listen to me, I think she will still listen to her.<br />
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New times. The never-ending challenges of parenting. You master one stage, and a new one begins. This is not unique to parenting with diabetes. But, it does add another layer. But, we will continue to march along. I will continue to try to do all I can to assure that Jess becomes a healthy, happy adult.<br />
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<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com0tag:blogger.com,1999:blog-5198789953732514022.post-37075892741165160192013-10-07T08:12:00.000-04:002013-10-07T20:53:39.920-04:00Four Years<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXEWZOo0WSncy468SJqdVdm65XzjsUZoAUHmgbWg0b7Pt_yLteUNMsBFym7qvSnKZGpussctrLsdTKB54ZBZke57dhXbMGM3kBEgH766AvBLunNruIy9A4g33JmiginNgmqqa6ikOKFA/s1600/P1000371.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXEWZOo0WSncy468SJqdVdm65XzjsUZoAUHmgbWg0b7Pt_yLteUNMsBFym7qvSnKZGpussctrLsdTKB54ZBZke57dhXbMGM3kBEgH766AvBLunNruIy9A4g33JmiginNgmqqa6ikOKFA/s320/P1000371.JPG" width="240" /></a><br />
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Four years today. Over 15,000 finger sticks, 1600 shots, 600 site changes, 180 dexcom insertions, and too many tears to count. And, when I reminded you a few days ago that your four year diaversary was coming up, you replied "dad has had it over 24 years...how does he do it?"</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPegVEFnsf4FVrUsWZsLiVUddMKOWqPWeUuOMFuqg6QfAS6pZsfHG0tGwNn0EMhUXrPp2fWblV_VOD-ANLsCQu5OMu61ISv-NZFr41DgmivqowoQ0Nu9sVypym-VB7_o08gfqXItaKNA/s1600/jess.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPegVEFnsf4FVrUsWZsLiVUddMKOWqPWeUuOMFuqg6QfAS6pZsfHG0tGwNn0EMhUXrPp2fWblV_VOD-ANLsCQu5OMu61ISv-NZFr41DgmivqowoQ0Nu9sVypym-VB7_o08gfqXItaKNA/s320/jess.jpg" width="240" /></a>We have come a long way. It is impossible not to feel some sadness today. I had told myself I would not. I mean we are in such a better place, we have so many new friends because of diabetes; you are healthy. But, I was kidding myself. Of course I am sad. And angry. I saw your beautiful little seven year old cousin this weekend. I looked at her tiny hands. I could not help but think of what diabetes has stolen from you. You lost your carefree childhood at age seven. We can tell ourselves and everyone else that we have not let diabetes take your childhood; that it does not stop you. And, it is true to some degree. But, not one day has passed when you have not had to say ouch, or feel a high or low, or think about diabetes. And, I hate that. I hate that I no longer remember what it was like when you didn't have diabetes. Vague memories are the carefree days when I didn't glance many times at my cell phone when you are away from me, when I put you to bed and didn't worry you might not be there in the morning.</div>
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The only way to survive is to focus on the positive. You are healthy, and most days happy. We have been enveloped by the Children With Diabetes organization and have found kindred souls who truly understand. I can not imagine going back to the days where we felt so alone. We have met wonderful people who we would love and be friends with even if not for diabetes. But, it is because of diabetes we found them. We have technology. Your dexcom has changed my life. Your pump has changed yours. Hope is here. Ed Daminao is racing the clock to make a bionic pancreas in time for his type 1 son to start college. And many us us believe he may actually do it. I have been given the gift of perspective. Between your sister's unexpected brain surgery and your diabetes, I have learned what is really important in life. I have learned to enjoy the present and to stop fearing the endless possibilities of the future. </div>
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And so tonight we will celebrate your four year diaversary. Another year of good health, bravery, and strength. While I can not believe it has been four years, I will give my thanks that you are healthy and keep marching towards a cure. </div>
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Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com3tag:blogger.com,1999:blog-5198789953732514022.post-51967175185425256322013-09-20T10:40:00.000-04:002013-09-20T10:40:03.895-04:00Fighting for our childrenI remember sitting in on my first talk by Crystal Jackson. She suggested so strongly that children have 504 plans in place. At the time we did not have one. I mean, why would we? Everything was going so well with Jessica in school. The teachers were supportive, the principal an advocate, the nurse very well educated in Type 1. Crystal said to me "now is the time to create one...you want to create one while everything is going so well." I am glad I listened.<br />
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Jess has entered the unchartered territory of middle school. What an incredibly different experience from elementary school. Despite meeting with the middle school counselor and nurse back in April to try to make sure her transition to middle school would be smooth in regards to her diabetes, it has been anything but. We were not given the opportunity to meet with her teachers despite asking. We were told in middle school the nurse and counselor take care of making sure teachers understand her Individualized Health Plan and 504. We were assured this had been done.<br />
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Jess takes her first math test. Her blood sugar is 89 and arrow down. She makes the decision to go off the dexcom rather than a fingerstick. She is 11, but now in middle school so there is no involvement from the teacher. A hard thing to manage alone at 11, when you desperately want to fit in. You don't want to draw attention to yourself. For the first time she now doesn't want anyone but close friends and teachers to know she has Type 1 (in direct contrast to elementary school when she spoke to the entire school on behalf of the JDRF.) She writes 89 and arrow down on the corner of the test as she has always done, has some skittles and starts to take the exam. She feels lower. She stops the exam and does a blood sugar check. She is 72 and feeling terrible (probably going down fast.) The teacher tells her that since she was in goal when she started the test she needs to continue it. Jess asks for 5 minutes. She doesn't feel well. She is "shaking like a leaf." The teacher asks why she is not taking the test. Jess explains she is low and can't concentrate. The teacher than tells her she has never seen her get low in class before, and asks if Jessica will be getting low for every exam. She asks Jessica how this is supposed to work and if Jessica is supposed to complete the test during the teacher's free time. The whole class is listening. Jess tells me she was near tears. Finally, the teacher tells Jess that she can stop taking the test and that she can come back during study hall during which time she will have "one minute to complete the test." Jess is devastated. An email to the counselor confirms that the teacher gave a slightly different variation of the story, but with the general premises.<br />
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The teacher is not a bad teacher. We are not angry at the teacher. The teacher does not understand Type 1 diabetes or Jessica's 504 plan.<br />
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Many emails have ensued and today we are finally being given an opportunity to meet with Jessica's teachers as we have wanted to do since last April. My hope is that it will be a time to educate as well as advocate, and that we can work as a team as was always the case in elementary school.<br />
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And, I am incredibly grateful and relieved I took Crystal Jackson's advice. I was shortsighted to think things would always go well, so why would we need one? Crystal was exactly correct that the best time to create one is when things are going well. We now have it, and we will use it to make sure Jessica's rights are protected.<br />
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It is upsetting the time and effort this is taking. It is hard not to be angry that my child has been hurt. It is hard not to hate diabetes. Yet, instead I focus on being thankful. Thankful that we were able to attend a lecture by Crystal, and thankful that she gave me such good advice. Thankful for the American Diabetes Association's Safe at School program and the help that is available.<br />
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I hope this story has a happy ending. I hope the meeting today goes wonderfully and that Jess goes on to have access to safety and the ability to reach her potential. Until then, I will continue fighting for my child and raising awareness so that all parents can fight for the safety, happiness, and ability to thrive for their Type 1 children.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com2tag:blogger.com,1999:blog-5198789953732514022.post-41738875675213803802013-07-24T22:30:00.002-04:002013-07-24T22:30:27.031-04:00Hope<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKEvvBgd1YZ2Z3B6kL5l80PRBWEyH1YX-e0WNvrk0HBj7cn1HjXsgdpyijMkB2qYbkLlQM8pJr37WnMZz1_BEI0k59pM2uz0b-aX1aKvFd6YR6rIscft2sp2ACIg6G13An1dXoGQ7tIw/s1600/jess.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKEvvBgd1YZ2Z3B6kL5l80PRBWEyH1YX-e0WNvrk0HBj7cn1HjXsgdpyijMkB2qYbkLlQM8pJr37WnMZz1_BEI0k59pM2uz0b-aX1aKvFd6YR6rIscft2sp2ACIg6G13An1dXoGQ7tIw/s400/jess.jpg" width="300" /></a>This is my new favorite picture of Jessica. It was taken at this year's Children With Diabetes Friends For Life conference. To me it symbolizes the entire conference. Before we left home for the conference, Jessica was ripping sites out of her arms as she was embarrassed, and hiding her pump. Before, she felt insecure and alone. She blossomed at the conference. She was surrounded by people who "get it," and at the conference she was in the majority. It changed her. Just like in the picture, she is still proudly sporting the dexcom in one arm and her pump site in the other. And, I am filled with hope that she will enter middle school feeling supported and confident.<br />
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My husband has hope. He will have lived with Type 1 for 25 years this May. And, he has lived well. He has been a shining example of not letting diabetes stop you. But he had not had hope. I remember frantically searching research studies when Jess was first diagnosed. I was desperate for the hope of a cure, or something that would make this terrifying disease easier. My husband did not share my enthusiasm. He told me at that time that he had learned long ago not to get his hopes up. But, that has changed. For the first time since I have known him, he is filled with hope and excitement. And, Ed Damiano is the reason. His work on the bionic pancreas is the most promising thing we have seen. It gives my entire family hope that easier days are coming.<br />
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It feels good to have so much hope. We returned from the conference rejuvenated and filled with new ideas and energy. <br />
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It is amazing to have an organization such as Children With Diabetes. So many patients are alone and scared, without any support to be found. It is easy to understand why they may lose hope, feel defeated, and appear to be "non-compliant." Thank you, CWD. Thank you for support, friendship, education, and HOPE.<br />
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</span></span>Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com2tag:blogger.com,1999:blog-5198789953732514022.post-44256078915362421602013-06-18T09:53:00.001-04:002013-06-18T09:53:26.723-04:00IdentityOne of many things I have always admired about my husband is that he is so comfortable with his Type 1 diabetes. Ever since I met him he has checked his blood sugar in public, given himself insulin (the many years he was on multiple daily injections,) and had no problem with people knowing. I don't ever remember him specifically telling people, but taking care of his diabetes was just part of who he was, and he never hid it.<br />
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From the start, we have approached Jessica's diabetes the same way. She was seven when she was diagnosed so she really didn't have her own viewpoint on managing diabetes. We checked her blood sugar in public, gave her injections, encouraged her to speak on the topic whether on the radio, or at school.<br />
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But, she turns eleven very soon. She will be entering middle school. She is now developing her own T1 identity. And, she has every right to.<br />
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And, it turns out, that despite all of our efforts to encourage otherwise (right or wrong,) she does not feel the same way as Sean.<br />
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Nor, has she had the same life path as Sean. He was diagnosed at almost 18, when he was much more immune to teasing and bullying, and when it was much less likely to occur.<br />
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Jess has had her fair share of nasty comments this year. She has come home upset many days by things classmates have said. Ten year olds aren't the nicest bunch, and I am sure middle school will be worse.<br />
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She has ripped out her dexcom site the evening of the spring concert as she didn't want everyone to see it while she was on stage.<br />
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She has hidden her pump, and refused to wear a dexcom while swimming for fear people will see.<br />
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I caught a small glimpse of a benign version of what she must deal with on a daily basis.<br />
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As a special elementary school graduation gift, I took the girls and we got pedicures together. This should have been a time Jess could just relax and enjoy. The woman doing her nails meant no harm at all. But I listened as she said "If you don't mind me asking, what is that on your arm? (Jess's dexcom site.)<br />
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Jess does mind. She hates answering these questions. Like any almost 11 year old girl she hates being different.<br />
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As I listened to her explain that she had Type 1 and what it is, I realized that even while getting a pedicure she doesn't get a break. She can't even get her nails done without a reminder that she is different. And, as she told me after the pedicure, she hates this. Of course we talked about how it is an opportunity for education and advocacy. But, you know what? The bottom line is that is sucks. How many 10 year olds have to answer questions like that while simply trying to have a moment of relaxation?<br />
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Jess started a new day camp this week. She as usual is a super hero. There is no nurse, and she is completely self managing. I am so proud of her.<br />
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Last night, she tentatively said "Mom, can I tell you something?" She shared with me that she is going to the bathroom to check her blood sugars.<br />
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She realizes this is not what our family has ever done. This is not what her dad does. And, she is questioning whether this is ok. Can she find her own way as a Type 1 individual in our family?<br />
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I tell her I am so proud of her for how well she is taking care of herself at camp. I tell her that she needs to do whatever she is comfortable with.<br />
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I have not made her wear the dexcom this week. Sean hasn't realized yet that I am giving her this break. I am back to nightly 2 am blood sugar checks. But, it is one way I can help her define who she is. She doesn't want the dexcom this week. She doesn't want one more gadget that makes her different. And, I think that is ok. My hope is that by a give and take she will be more accepting and adjusted in the long run.<br />
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I need to talk to Sean. He is such an amazing dad. But, he is so secure in his own Type 1, and he was never an almost 11 year old girl. We need to allow her to develop her own Type 1 identity.<br />
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There is no instruction book on how to parent kids with Type 1. We had hoped that we were raising Jess in a way that she would see diabetes as Sean does...his greatest strength.<br />
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And, maybe we are.<br />
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But, life is a journey. Jess needs safety, acceptance, and love to explore and figure out who she will be. Will she always test in the bathroom and try to hide any outside evidence that she is different, or will she someday be more like Sean?<br />
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We need to reassure her that either way is ok. We love her no matter what.<br />
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As, I wrote on her note in her lunchbox today, she is my super hero. And, if she needs to hide that fact that she is a super hero like Clark Kent did, then that is ok with me.Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com3tag:blogger.com,1999:blog-5198789953732514022.post-14143981866331201222013-05-02T10:42:00.000-04:002013-05-02T10:42:28.684-04:00A Family Disease<br />
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Jess couldn't visit Courtney in the ICU, but as soon as we got to the regular pediatric floor, a caring nurse arranged for us to take Courtney off the floor to the lobby so they could be reunited. It was cold and flu season and nobody under 16 was allowed on the floor. Until then they FaceTimed and those conversations were priceless.</div>
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Courtney was asked to fill out a sheet so the nurses could get to know her. The kid had just had brain and spine surgery. Under "What makes you scared?" she didn't list her surgery or the recovery that was still ahead. Her response was "Jessica's blood sugars."</div>
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Anyone who thinks that only the person with type 1 is the patient is not correct. Type 1 diabetes is definitely a family disease.</div>
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Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com1tag:blogger.com,1999:blog-5198789953732514022.post-80638349460759585802013-04-30T22:58:00.000-04:002013-04-30T22:58:11.775-04:00ChangedI am changed. Not that this is a huge revelation. We are all changing every day. But, this was a big change.<br />
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I had gotten used to being the mom of a type 1 child. I don't like it. But, we have found a new normal. We have found a home in Children With Diabetes. It is still a constant, daily, exhausting struggle. But it is a struggle that is now normal.<br />
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Finding out that Courtney needed brain and spinal surgery was hands down the most stressful thing I have ever been through. And, that includes medical school, residency, and some pretty tough situations.<br />
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With all of those other situations, including Jess getting diagnosed I felt I was in control. It may not have been an accurate perception all of the time, but it was at least a nice delusion. There was no way I could delude myself that I was in control of any part of Courtney's situation. And, things just seemed to spiral out of control. The week of her surgery she had a big hematology work-up for a possible bleeding disorder, the kitchen sink flooded, the car was in a minor accident... It was just one of those weeks where absolutely everything felt like it was spinning out of control.<br />
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Saying goodbye to her in the OR...watching her drift to sleep and lose all tone...that had to be one of the hardest moments of my life. Not knowing how things would go. Not knowing what she would be like. Was the Courtney I know going to be the Courtney after this surgery? I've unfortunately seen way too many complications and bad outcomes. They prepared us that she might still be intubated when we saw her initially in the intensive care unit after surgery. In my mind I had gone to worst case scenarios. She bleeds to death. She's paralyzed. She suffers brain damage. Sure, I could tell myself that these were very unlikely. We had carefully researched and went to the best pediatric neurosurgeon...we had done the little that we had control over. But, I could not stop the thoughts from coming in the middle of the night. For the first time since Jess was diagnosed, type 1 diabetes fleetingly did not seem so bad. Friends and family carried me through.<br />
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Seeing Courtney in the intensive care unit, I felt the biggest relief I have ever experienced. Weeks of constant chest pressure evaporated. She was awake. Smiling. Talking. She was connected to many IVs, foley catheter, heart monitors, pulse ox, and so many things that looked foreign on her small body. But, the moment she talked to me I knew she was herself.<br />
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The hospitalization was surreal. The night in the intensive care unit was the hardest. I was in a fog where every two hours Courtney was examined and poked. At one point they told me they were ruling out diabetes insipidus. Diabetes. The word that haunts us whenever we think of Courtney...the child not yet affected. Diabetes insipidus is not at all the same thing as type 1, and thankfully she did not have it.<br />
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Sometime the next day we were moved to a regular pediatric floor. I continued in a surreal state. Nights interrupted by children screaming during procedures, a worried father walking the halls, my own daughter on a PCA (patient controlled pain medicine IV), her eyes glazed over from the narcotics and valium. Sleepless nights with frequent vital signs and neurologic checks. And yet, it also felt like a break. Even as I write that I realize how pitiful that sounds. I had one job in the hospital: to be Courtney's mom. I did not have to check blood sugars, measure carbs, pack lunches, see patients, do all the housework. I just had to be Courtney's mom. And, every time I looked at her I was just so thankful beyond belief that she was alive and breathing. It was a simple, surreal existence. I remember thinking so many times that I could breathe again. That constant chest pressure was gone. I could finally see beyond the surgery. Courtney was going to be okay.<br />
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As with Jessica and so many of my pediatric patients, I was overwhelmed with how children handle things so much better than adults. Never did Courtney panic. I never saw her cry in pain. She would simply push the button for more narcotics. She handled things better than I did, and better than I would have by far had I been the one having the surgery. Children simply amaze me.<br />
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And, now we are home. She is still recovering, not yet back at school. It will be awhile before she can run and play again. Things must heal. But, her Chiari is cured.<br />
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I wonder how this makes Jessica feel. I know I have thought about it. As absolutely acutely horrific as this entire experience was, Courtney is cured. Jess continues her battle, her cure still elusive and unsure.<br />
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Our daily life with diabetes in back. Relentless, exhausting, but yet our normal.<br />
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And, I am thankful. I missed normal. I missed my delusion of control.<br />
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I look at Courtney and Jess differently. As with all parents, I always imagine I could not love them more. And, yet especially after this it has exponentially grown.<br />
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And, I am changed. My perspective has changed. I have learned twice now not to take my children's health for granted. I hug them tighter. I listen closer. I am thankful for this forced time with them, without the distractions of a stressful job.<br />
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Both my children carry visible reminders that they are warriors. Jess with her calloused fingers, and pump. Courtney with her incision that will become a scar.<br />
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They, too, are changed.<br />
<br />Tamarahttp://www.blogger.com/profile/08659177467814124436noreply@blogger.com4