tag:blogger.com,1999:blog-84948353428198335832024-03-05T14:59:04.571-05:00BS and INsillionMom to 2 Type 1s and wife to a Type 1, writing about my experiences. None of what you read on here is medical advice. Always seek discussion with your doctor when you have questions or are making changes in how you do things. Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.comBlogger151125tag:blogger.com,1999:blog-8494835342819833583.post-21463395732792260292021-06-07T07:50:00.002-04:002021-06-07T07:50:19.407-04:00Lifelines<p><br /></p><p><br /></p><p>Plastic tubing inserted in your body</p><p>attached to a device to deliver life</p><p><br /></p><p>Pointed needle puncturing the skin</p><p>and pushing liquid life in</p><p><br /></p><p>Just a droplet</p><p>in an ocean of years</p><p><br /></p><p>BeepBeepBeepBeep</p><p>Urgent low at 3A.M.</p><p>Juice in hand</p><p>Got to be at work @ 4</p><p><br /></p><p>Wipe Wait Click Snap Squeeze</p><p> Blood </p><p><br /></p><p> Beep</p><p> Number</p><p> It's too low</p><p><br /></p><p>Did you check?</p><p>Did you dose?</p><p>What's your number?</p><p><br /></p><p> Wake up</p><p><br /></p><p>Drink some juice</p><p>Get some carbs</p><p><br /></p><p>Please wake up</p><p>Drink. A. Juice.</p><p>I love you</p><p><br /></p><p>Third time this week</p><p>I'm going to be late for work</p><p>I NEED you to wake up</p><p> Drink This Juice</p><p><br /></p><p>Coffee Shower Dressed</p><p>No time</p><p>Coffee Dressed</p><p>Walk out the door</p><p>Check my phone</p><p>Level</p><p>Maybe it'll go up</p><p> Please</p><p>I can't be late</p><p><br /></p><p>Breathe</p><p>Focus</p><p>Work</p><p>Work</p><p>Breathe</p><p>Check</p><p>Focus</p><p>Breathe</p><p><br /></p><p>Walk in the door</p><p>Beeeeep Beeeep</p><p>Honey, what's your number?</p><p>Did you check your ketones?</p><p>You need to drink some water</p><p> And give a correction</p><p><br /></p><p>Wake up</p><p><br /></p><p>I need to pick up your scripts on Friday</p><p> When I get paid</p><p>Do you have enough til then?</p><p><br /></p><p>What's that ringing</p><p>He's sleeping</p><p>Hands over his ears</p><p>Sweetie, your pod's dead</p><p><br /></p><p>Do you want my help or do you got this?</p><p>Okay?</p><p>Okay</p><p><br /></p><p>Wake up</p><p><br /></p><p>Make a meal</p><p>Timing it right</p><p>Go ahead and prebolus</p><p>Oh I don't know</p><p>I don't know</p><p>How many carbs</p><p>I don't know</p><p><br /></p><p>Careful</p><p>Cleaning</p><p>Careful</p><p>Water for boiling, bathing</p><p>Disconnect while connecting</p><p>Wash your head </p><p> Rinse</p><p>Your back, shoulders, and belly</p><p>avoiding the devices</p><p><br /></p><p> Wake up</p><p><br /></p><p>This is Love</p><p>Steady, constant</p><p><br /></p><p>I really want to read a book,</p><p> take a bath</p><p>just get away for a few days</p><p><br /></p><p> instead</p><p><br /></p><p>I'll get some flowers</p><p>and take them to my</p><p>sister-in-laws' grave</p><p><br /></p><p>The more profits projected</p><p>the more flatlines on the graph</p><p>I have 5 years to make it right</p><p>I'm out of time</p><p>Out of time</p><p>We are the lifelines</p><p><br /></p><p>Wake up</p><p><br /></p><p>--Mindi Patterson</p><p><br /></p><p>I'm a Mom to 2 T1 sons</p><p>Wife to a T1 POWER wheelchair user</p><p>Grieving sister-in-law to Meaghan Patterson Carter who died with Christmas presents unopened on December 25th 2018 from insulin rationing.</p>Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-33096723685522919122020-05-12T16:56:00.001-04:002020-05-12T16:56:08.860-04:00SisReserved. You reserved your words for when they mattered. Your hugs for those you loved. A healer, a nurse. Easy to laugh and bring light to those that surrounded you. Cutting with words and mending as well to suit the situation. Sometimes, sometimes showing your vulnerability but always so resilient. So self-assured. So competent. Headstrong. A bull-headed taurus. A lover of animals and friends. Memories crash like waves. Tears fall unbidden. Laughter breaks the silence. And we love you always, all ways. Every new experience missing a piece. The unfairness of it all. The anger. The palpable sense of loss. I sat in the parking garage at Kettering hospital when your brother was admitted the beginning of March this year crying uncontrollably. The memory of talking with you years ago when he was admitted and your calm steadfast comforting voice hurt not to hear it this time, to never hear it again. To know that we will never hug you again....heartbreak. I took some roses, pretty lightly colored pink ones, to your grave today on your birthday. I wore your favorite colors, pink and green. I cleaned the weeds off your plot. I told you about the global Coronavirus pandemic, your brother, the boys, your parents, your friends, and how nurses like you need help. How they are being applauded but don't have protection. How you know how broken our healthcare is. I made promises. I thanked you for the pulse oximeter that was yours that we use daily now. I cried silent tears, but the sun peaked through the clouds. I apologized for crying. I pulled myself together. I brushed the dirt off, took a deep breath, and headed down the knoll. I heard you. Lean on Me was playing on the radio as I left the cemetary. All ways, Meaghan. Always.<br />
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<br />Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-62591519442700271252020-01-23T03:54:00.001-05:002020-01-23T03:54:27.943-05:00The price of insulin is killing Americans<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/NBk_HQNOi-M" width="480"></iframe>Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-7106841460961238102018-12-30T08:23:00.003-05:002019-02-09T05:22:50.311-05:00In Remembrance an embraceI was living in Indianapolis and my husband was in Dayton (his hometown) when my husband and I first started dating. When it came time to meet his family, I was informed that his sister could be difficult. She really hadn't liked any of his previous girlfriends. One weekend we spent in Dayton, he sprung the meeting on me...we're going to the fire station where Meaghan worked so she could meet me. I argued, I pleaded for a different day for the meeting, I felt messy, I was nervous. We went to the fire department. And I liked her right from the start, even if she intimidated me. Honest and blunt. Outspoken. Funny. And she would do anything for her family, a protector. I understood. Older sister, younger brother. She didn't want to see him get hurt. And she accepted me, flaws and all. I finally had a sister. We bonded. She had so many hilarious stories of her brother. They could fight like cats and dogs but don't you dare pick on him or she would be right there strongly defending him. <br />
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Right after I had Drago, she was at the hospital holding him. Then three weeks later I developed a high fever (104) and she was called by her brother. I didn't want her to come over, I was so sick. She insisted, she was a nurse, and went with us to the hospital. But on the way she was ravenously hungry and we had to stop for food for her. We didn't understand. She was diagnosed shortly after that with diabetes at the age of 29. Pretty quickly after that she was put on insulin. And then she got a pump, but she was fairly private about it all. So much so that I didn't really know what type 1 diabetes was. I was familiar somewhat with Type 2 and knew sometimes they needed insulin. I was so clueless. <br />
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In 2011, my husband was diagnosed with diabetes. Meaghan immediately told him he'll probably have to go on insulin pretty quickly. He didn't. Our doctor had said Type 2 diabetes but no tests were ran. I still didn't know about Type 1. Cro managed with pills and diet changes and exercise and at first this worked.<br />
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Then five years ago this week, I learned first hand what severe DKA and Type 1 diabetes is when MonkeyMan was diagnosed. And again, Meaghan was there.<br />
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And again with Drago. And again with Cro. And in those five years Meaghan went into DKA twice. She was afraid of lows and tended to run herself higher. <br />
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Early this summer she lost her job and her insurance and had a disturbing A1c, but I gave her resources a list of them and we found a way to get some insulin. And she was working on solutions. There was no obstacle she couldn't overcome. She was stubborn. And that seemed to be that. When we would check in on her she'd assure us she was fine. From here I will let her brother's words tell the rest. My heart is shattered. <br />
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"<span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;"> Meaghan Carter passed on December 25, 2018 from complication arising from Diabetes Type 1. I visited with her roommate, Cookie, for a few hours on the 26th in the afternoon as we began the long process of making all the arrangements for the funeral. An image stuck in my head from that visit was seeing my sister's Christmas presents unopened sitting there under a perfect little twinkling tree. Gone, My sister was gone. I'd been told by police. I'd talked with Cookie about it. I informed my parents moments after learning from that cop.myself she had passed. Seeing those presents, that thing which should have been </span><span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;">done, should have brought joy or warmth or smiles still taped shut, still wrapped...something made it real and concrete right there in the traditional action not taken.</span><br />
<span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;"> Diabetes kills. It muddles the mind and decisions become impossible. Insurance issues </span><span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;">can prove deadly. Not knowing how or when to reach out for help can be fatal. As an LPN, </span><span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;">Meaghan Carter knew how to take care of others. She knew how to make people laugh and feel loved. She knew how to set aside her own problems and tend to others needs. We all know the saying about sometimes your greatest strength is also your greatest weakness. Well, Meaghan knew how to push people passed their own hesitation towards acting to improve themselves. She held people to higher truth, to expected standards. She was good </span><span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;">at this. It takes a toll. Exhaustion and fatigue and the struggles of working in the medical field and all that entails. Job surfing from one company to the next trying to maintain insurance and keep her living expenses flush is difficult with the best health. Meaghan had Type I Diabetes. Health care costs without insurance can be a death sentence. Managing the stress of caring for others and managing your own health is a hardship and takes a special kind of vigilance. Meaghan did this for 18 years. She established her capacity to handle many many situations under pressure while combating this difficult and sometimes unmanageable disease. Sometimes the red flags never go up, sometimes her loved ones do not see the warning signs. Meaghan was a fierce individual striving towards her own goals. She kept her few friends close.</span><span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;"> </span><span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;"> </span><br />
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<span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;"> This Meaghan Carter Memorial Fund goes to JDRF Southwwest Ohio which is responsible research, advocacy, constituent policy work as well as mentoring, training, educating, and building community. They do this across the wide and varied disciplines </span><span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;">involved with moving towards better awareness, fairer drug pricing, bringing more advanced solutions to market. Meaghan had expressed an interest to be a part of our family team, T1D3, within the last year. T1D3 was started by my wife, in honor of our first child, diagnosed with Type 1 in 2014. Since then our other son and myself have also been diagnosed with Type 1 Diabetes and fundraising and involvement with JDRF Southwest Ohio has increased every year. Since we have lost Meaghan to the disease, we are more</span><span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;"> than ever strengthening our resolve and commitment to a cure. We can not sink for a minute into despair and lose our focus on helping to bring this disease to an end. Our lives depend on it. It seems only right that we are dedicating our walk next summer to my beloved sister Meaghan Carter. In honor of her and in lieu of flowers and such, please donate to this cause in her name at the link below. If you have any questions about this please reach out and either my wife or I will help facilitate. I will honor my sister's memories and legacy every day for the rest of my life and at this moment, this is the best way to do this. Please join us in this effort."</span></div>
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<span style="background-color: white; color: #373a3c; font-family: "gotham book" , sans-serif; font-size: 16px;">And more words...</span></div>
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"Full disclosure: Losing my sister sucks. Sudden. Unexpected. Shocking. Hard. Painful. Maddening. </div>
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Heart wrench. Hear break. Working through the mechanics at the end of life is just thick arduous work as your mind wrestles with meaning and loss. Being a dad to kids who suffer the same disease that took my sister. Feeling helpless. Wishing and What ifs. Soul weary. Trudging empty pockets where emotions don't come. Fast slamming thoughts that lead nowhere but yearn for better grasp of questions you really it turns out shouldn't even ask yourself. How? Or Why? Pieces of information you didn't want, or didn't know cast you about like crossed waves in a rough water. It is all at once drowning and a desert of too much and not enough and you don't even know which is which or how this ocean desert is all of a sharp sudden the only place you can be. The voices of others going through something you can't even describe pushing into your feels in ways you couldn't have anticipated. Yours pushing into theirs. Dried thirsty seas within each of us of sad. Torrents of uncertainty, of long rolling memories conjuring something shaped hopefully like love, hopefully like honor muddling toward shore in the leaky boat of the broken heart. Are we all out there? Oars scratching in the dust, rowing our own little madness around, lost in grief? I brought a shovel, should we fish? Nothing makes sense knowing she's gone. My sister and I rarely saw eye to eye. I wouldn't even say she was a huge part of my normal day to day world. It is now, however, all sadness and loss. How do I carry this forward? How do I get out of this stupid boat. Is this even the right metaphor. My sister was a healer. She made us laugh, she showed everyone always her true self. A more genuine heart on your sleeve person is hard to imagine. She was a proud self sufficient loving human being. The only sister I have ever known. Diabetes took her life. A Nurse. A Daughter. A revered and beloved friend. Cherished and adored. If I am being honest sometimes frustratingly certain about where she stood. Her grace was her self awareness of her own flaws and the confidence of the learning that made her a healer, gave her the compass to know how to hold true. I've said too much. I'll never say enough. Even now my sister is making me crazy. And now I laugh! In a minute I'll probably cry. Loss sucks. Grief sucks. Look. I know I'm by far not first not first or last to go over the waterfall of sand. I know I'm having a moment and the view of it from a seasoned sufferer of loss has that knowing and the view from those who haven't...well. Maybe I haven't even said it well enough. I'm asking again for those folks willing and able please contribute to JDRF in memory of my sister and help us honor her. Consider coming to walk with us next summer in Cincinnati as we honor her memory again and dedicate our walk at Kings Island to her and the continuing fight against this deadly disease. I know I've been asking for four years and I wrote back then about how this disease could kill. I think perhaps I didn't even know what that meant except from afar. Now my heartbroken family lives that nightmare going forward. I'm sad and hurting and I wish you all would join me to help make her passing into something more. Thanks, "</div>
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<a href="https://www2.jdrf.org/site/TR?fr_id=7599&pg=personal&px=10702876" target="_blank">https://www2.jdrf.org/site/TR?fr_id=7599&pg=personal&px=10702876</a></div>
Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com3tag:blogger.com,1999:blog-8494835342819833583.post-59402534610209865172018-05-28T10:01:00.001-04:002018-05-28T10:01:42.189-04:00Held Hostage by the UncontrollableNumbers, numbers, numbers. With three they have been anywhere from low to high whenever we check. Haven't really had all three in range at the same time. Each is so different. Have you ever juggled? That is all I seem to do now but I never learned how. When our second was diagnosed there wasn't education on how to handle one high and one low at the same time. We just muddled our way through. And now...three. And I feel like I'm failing all three of them. My brain was full with just one and now I can't seem to keep it together. And all I really want to do is sleep. I think I'm at the boiling point. You know, put a live frog in a pot of water and slowly bring to a boil and he won't jump out. If you already had a boiling pot of water and put him in he'd jump out immediately. Acute crisis versus chronic. If someone is severely low (has happened in the last week) I can feel the adrenaline push me into overdrive. I react. I have to. No choice. Fear sucks. Anxiety sucks. Depression sucks. Diabetes sucks. I hate middle of the night 3am pump changes and/or insulin shots. I despise trying to navigate insurance. And the stress that comes when we can't get more insulin "just yet" cause it's not time or insurance won't approve what the endo prescribed. Ugggh. Internally I am constantly, silently screaming. So many hoops. How do you live a "normal" life with this crap? Yes, I work. I volunteer. But friends seem to have disappeared, and it's just us in the middle of the never ending storm. Held hostage by the uncontrollable.<br />
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And I know it's not just us. I have a friend who was on his last 30units of his insulin and he couldn't get more...his endo wouldn't write the script because he hadn't been in recently. The doc wouldn't write a script for medicine that keeps this person alive until he made an office visit. Thirty units doesn't even last a day. Let that sink in for a minute. Or google Kevin Houdeshell. This is real life here. Life and death. And choices.<br />
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SugarBear seems to like to run his BG a bit higher. I think he is afraid of lows. Drago doesn't like to check his. I think he doesn't want to have the responsibility of the choice a number will dictate. And Cro wrangles with going out and having to publicly take care of his disease. He doesn't want to be judged. I'm tethered to these boats but they are not mine. These are just my thoughts and perceptions. Everyone has there own perspective. We're all in the storm. My heart belongs to my family and our own boats but I don't have all their struggles. I can only surmise their challenges. And I get reminded often that I don't truly know how they feel. I don't have Type 1. <br />
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Out here it doesn't have to be lonely. We can gather all our boats together and face the tumult. We can work towards that normalcy but pencil things in because you never know when a wave will crash over you. But you have to stay afloat. Together. <br />
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Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com1tag:blogger.com,1999:blog-8494835342819833583.post-23575038532826435322018-04-07T08:28:00.001-04:002018-04-07T08:54:37.706-04:00Life is Worth ItDecember 28th, 2013....March 3rd, 2015.....April 5th, 2018<br />
13.7....7.7....12.4<br />
<br />
A child...a teenager...an adult.<br />
<br />
In severe DKA....caught early....misdiagnosed as Type 2.<br />
<br />
Type 1 doesn't care.<br />
<br />
Whether it is a sudden onset or a slow one, inevitably the pancreas won't work right and artificial insulin will be necessary.<br />
<br />
My husband was originally diagnosed as Type 2 in 2011. He struggled to have good BG readings with a constant change in the different kinds of pills he was taking. He watched his diet. Exercise was difficult but he did his best. No one ever checked his autoantibodies...not once. I mean he was older and overweight so people made assumptions. All of his other diseases are autoimmune. After our youngest was diagnosed T1 I started campaigning that he should look into checking whether he was as well. Our family doc was pretty clueless about LADA. <b style="background-image: none; border: 0px; color: #222222; font-family: 'Helvetica Neue', Helvetica, 'Nimbus Sans L', Arial, 'Liberation Sans', sans-serif; font-size: 16px; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Latent autoimmune diabetes of adults. </b><span style="color: #222222; font-family: "helvetica neue" , "helvetica" , "nimbus sans l" , "arial" , "liberation sans" , sans-serif; font-size: 16px;">Then older son was diagnosed with T1. But still no one checked. My husband started having some pretty serious issues, swelling of extremities, neuropathy in his feet, vision issues, and more pill prescriptions. He also was more and more susceptible to long lasting infections. Finally he talked with his doc about seeing a specialist and getting the testing done. She made an appointment for him to see an internal specialist and they drew labs. The labs never came back! No clue what happened to those but he went to the specialist on March 22nd, had more labs drawn on the 23rd, </span><span style="color: #222222; font-family: "helvetica neue" , "helvetica" , "nimbus sans l" , "arial" , "liberation sans" , sans-serif; font-size: 16px;">and started insulin the evening of the 23rd. He started on what is called a sliding scale and is so outdated. He struggled to bring numbers below 200, had high ketones that took days to clear, issues with doing shots....a miserable experience. His new doc was aware we have two children with Type 1. I made numerous calls talking to them as well. A little over a week ago we finally got him switched to a carb to insulin ratio which works sooooo much better. We are still making adjustments but he is starting to feel better. The swelling has even gone down and his feet feel a little better. And we have had lower numbers! This isn't easy by any means but especially for someone who is permanently disabled with mobility issues. One of the struggles is he can't do some of his own shots...so I help. We did get pens after a couple of days as syringes and vials were not going to work for him at all. Pens are better. His doc has already said that if his labs came back Type 1 (which the specialists all felt that it would) she would like to have him on a Dexcom. So Thursday hubby called the office to see what his labs were. The nurse on the phone was awful...."everything looks fine except your A1c is 12.4...you really need to get that down...we like to see a lower A1c....you need to work on that..,that is really high!" Of course it is high, no insulin will do that to you. Finally got her to inform on the specific labs...oh your GAD is high. And there it is...autoimmune diabetes. So here we are...three Type 1s. Three on insulin. Numbers, numbers, numbers.....but we got this. And life is worth it.</span><br />
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Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com2tag:blogger.com,1999:blog-8494835342819833583.post-49465434370204524002018-03-03T19:03:00.002-05:002018-03-03T19:07:57.145-05:00Diaversary<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">What Keeps Us Going</td></tr>
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Four years and two months for MonkeyMan and today marks exactly three years for Drago. Thousands upon thousands of finger pokes. Lots of shots. So many pump changes and cgm changes (hey, those things have needles too). Regularly interrupted sleep. December 2017 and January marked some firsts..,.the first time I had to go in late to work because MonkeyMan dropped super low and hubby was fast asleep. And our very first ER trip in January for MonkeyMan due to the stomach bug where he got some fluids and IV zofran and managed to somehow not end up in DKA. Stomach bugs and T1 are quite challenging. But MonkeyMan took it all in stride with such an amazing attitude. He had doctors and nurses in the trauma room laughing with his "I'd rather take another needle than hear another Dad joke." "Yay, stomach bug." And "Where do you get one of these beds?" comments. Life is both entertaining and crazy with teens with T1.<br />
<br />
So here I am today, thinking about the last three years with two T1s. We had our endocrinologist appointment yesterday and it was the worst for both boys. I think we are all a little burnt out. The daily nonstop aspect of this disease definitely takes a toll. We've reached a point where Drago doesn't consistently wear his CGM, where MonkeyMan would rather just eat than prebolus, where the hubby and I are tired of the beeping and the struggle. I'd say we would all need a break but you don't really get a break with this disease. No breaks ever. Ever. <br />
<br />
So yeah, today, today I let myself cry. I let myself grieve. I kind of "took a break". We still checked BG, bolused for food, corrected highs, treated lows, but I stayed in my PJs. I watched TV. I'll pick up the pieces and start again tomorrow. I have to.Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com1tag:blogger.com,1999:blog-8494835342819833583.post-6376353509856474302017-11-12T09:26:00.003-05:002017-11-12T09:26:44.348-05:00Always ThereNational Diabetes Awareness Month #NDAM November 2017. And how am I participating. Every year has been different. Last year my focus was difficult as at the beginning of the month I had to perform CPR on my neighbor who passed away in spite of my efforts. And she had diabetes. It put a pit in my stomach to think about the life of my boys battling this disease. That pit never seems to leave. Some days I pretend to not notice it and other days it is the only thing I notice. <br />
<br />
This year is different. I have made so many changes. I keep trying to focus on the positives. It is a constant challenge. I have gotten even more active with JDRF and that is making a difference. Last weekend I even participated on a panel at our region's summit with three doctors on T1D Triggers. It was quite interesting. Next weekend I am participating in a Severe Hypo Patient Advisory Board with Lily. I want, no need, to make a difference. And yet at home I struggle. <br />
<br />
Drago is 17 now and diagnosed over two years and SugarBear is almost 13 and been at this for almost four years. I sometimes forget what life was like before all of this, before I knew.<br />
<br />
Halloween had me changing out a pod on my Starry (K)night 10 minutes before handing out candy. Constant. Never ending. Always there. <br />
<br />
Heading home from work one day after running just one errand (grocery shopping) and getting a text and a call that Drago needs fast acting sugar as he is severely low. Constant. Never ending. Always there.<br />
<br />
Checking blood glucose at 3am with a headlamp and blurry eyes to see 418bg pop up and realizing I have to poke my son again to check ketones and being relieved they are only trace but recognizing I will be up dealing with it until I leave for work at 5:30am and handing it off to my husband with fingers crossed. So sleep deprived. Constant. Never ending. Always there. <br />
<br />
Waking early on a day off because the Dex alarms that SugarBear is 44 and dropping. Trying to wake him to drink a juice and having him take an arm out of his shirt for a pod or Dex placement because he is still asleep and isn't comprehending what is going on. Constant. Never ending. Always there. <br />
<br />
So I post awareness stuff on social media and wonder if anyone besides those that already know are being reached. I think I'm too vocal and scare people off. I think diabetes is Constant. Never ending. Always there. <br />
<br />
I meet people newly diagnosed. Those with it like us for only a few years and those celebrating milestones like 5, 15, 25, 45 years living. Constant. Never ending. Always there.<br />
<br />
Day in, Day out. Every day. No vacations. No breaks. Constant. Never ending. Always there.<br />
<br />
But I hope.<br />
<br />
I hope my boys know that I will catch them. I will do everything I can to make this life better for them. I will make the appointments, get the scripts filled, check BG when they are sleeping, wake when needed, advocate, inform, push for change. That I will be a Constant. Never ending. Always there. Because I am their Mama and I won't stop. <br />
<br />
So their Dad and I will continue our vigilance. We will be Ralph and Sam from Walt Disney, passing each other on our way to "work". We will make sure they are okay. Constant. Never ending. Always there. Because we love them. Because we care. Because it is necessary.<br />
<br />
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<br />Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com1tag:blogger.com,1999:blog-8494835342819833583.post-50117537296349750722017-09-03T10:07:00.001-04:002017-09-03T22:05:53.368-04:00It is Always Something<div class="separator" style="clear: both; text-align: center;">
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At one point in my life before the boys were diagnosed with Type 1, I had a friend that lived in my neighborhood. She had a son close to Drago's age. We tried to get together a couple times a week but it wasn't always possible because we were dealing with some health issues of my husband's and my own. She decided we could no longer be friends because our family had "too much drama." Pretty soon after that she moved and I have no idea where or what happened to her. I wonder sometimes what she would think now.<br />
<br />
SugarBear a.k.a. MonkeyMan or Cyborg now:<br />
Migraines, Type 1, Hashimoto's hypothyroidism, vitiligo, and psoriasis.<br />
<br />
Drago:<br />
Migraines, Type 1, GERD, vitiligo, gastropareisis, <span style="-webkit-text-size-adjust: auto; background-color: #f0f0f0; color: #363636; font-family: Calibri, Arial, sans-serif; font-size: 15.360000610351563px;">bilateral pars defect at L5. There is grade 1 anterolisthesis of L5 on S1 (basically a fracture in his spinal vertebrae that has "slipped", </span>and dysautonomia/P.O.T.s (postural orthostatic tachycardia syndrome).<br />
<br />
Hubby:<br />
Vitiligo, psoriasis, psoriatic arthritis, talus coalition, neck vertebrae lipping, double knee replacements, Type 2, diverticulosis, neuropathy. Permanent disability.<br />
<br />
Me:<br />
Endometriosis, shoulder surgery for rotator cuff, PVCs and PACs (preventricular contractions and preatrial contractions), and four slipped discs.<br />
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And I am the healthiest. Although right now one of my discs is not playing nice and I am on a short term leave of absence from work. Hopefully the shots I am having done on the 14th alleviates that issue for me for awhile. I have to function. I have to. I juggle all of the health needs. I do the research. I make the appointments. I keep our life going. The new issues going on with hubby and Drago are causing me concerns. Definitely drama. Drago has dizzy spells where he feels like he is going to pass out not related to his Type 1. He has consistent tachycardia that causes his chest to hurt, palpitations, shortness of breath. His nausea is severe making eating and dosing insulin correctly tricky. He has severe fatigue. He has brain fog that effects his learning. POTs is challenging. We are trying to find a doctor that will help him, that won't say just drink more fluids and have more salt. And hubby-foot pain and swelling from neuropathy. His joints, especially his shoulder, are constantly in severe pain. And me needing more help from all has been a burden. More drama. And woven through all of this mess is Type 1. Lows, highs, pump changes, Dex changes, dosages of insulin. It never rests and doesn't really let us rest either. We need rest. We need fun and outings and friends and life. We don't need drama, we don't want it. We don't go looking for it. But it seems to find us. The day before my shots my husband and I will celebrate our 20th wedding anniversary. We've dealt with a lot in twenty years, because it is always something.Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com1tag:blogger.com,1999:blog-8494835342819833583.post-73958712064269583812017-07-16T09:57:00.003-04:002017-07-16T09:57:28.349-04:00Marshy! Marshy! Marshy!When the ground isn't solid underneath you one gets pretty good at balancing and adjusting. You have to keep moving because staying in one place will cause you to sink. When constant change is one's norm it is easy to forget what that would feel like without it. And then when you get a brief glimpse of that solidness and you embrace it, slamming back into that change is hard. Transitions are never easy and life with Type 1 is a life of transitions.<br />
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The boys got back yesterday from T1 diabetes camp where each cabin has two counselors (both with the disease) and a doctor and nurse taking care of them while they experience typical camp life--archery, horseback riding, wall climbing, silly messy games, fishing, bb rifles, rain, sunshine, bug bites, camp food, etc....of course their camp is a little different, all the kids have to check blood glucose and give shots of insulin or change pumps and treat high blood readings and low readings appropriately. Drago even told us one night he had to eat peanut butter sandwiches because of falling blood glucose in the middle of the night and somehow would fall asleep in between bites on to the sandwich. Camp life can be challenging with a disease like T1. But there are so many benefits. The boys feel "normal" at camp. This year both the boys went to camp on pumps and with Dexcoms (cgms). When we picked them up yesterday only Drago had his pump on and neither had their cgm on. I was a bit surprised SugarBear decided he wanted to do shots all week (that means a shot with every bit of food and for corrections of highs as well as the stinging long acting lantus shot every night which at minimum is four shots a day). Anyway, the boys had a terrific week. They are covered in bug bites and too much sun and came with very smelly clothes! SugarBear even said "maybe" to going back next year where in the previous two years he has always said no right after camp. Drago said it was the best year so far. <br />
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Hubby and I had a super fun week chock full of seeing friends, sleeping as much as we could, and generally doing the things we don't normally get to do. The ground was solid underneath us.<br />
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Transitions: before we even left the campground we had the boys check their blood glucose levels because without that CGM window you feel like you are flying blind. Drago was on the lower end of range and SugarBear was high. We talked and laughed and the boys regaled us with camp stories about contraband like food in the teens cabin and one about one of the teens breaking his wrist at camp! Smiles and happy to have them back with us. And the monsters crept back in. "How are you feeling?" "Check your blood sugar, please?" "I know you want to shower but you have to check first?" "Did you bolus /give a shot for the food that you just ate?" "How much did you give?" "When do you want to put the Dexcom back on?" "SugarBear, we have to put your Omnipod on at 10pm." Etc...etc...etc...and then part way through the slam back into this life yesterday I realized something. SugarBear had no devices attached to his body for the whole week! Neither boy had to carry a kit the whole week! For a moment they had "freedom". They had solid ground. And I stopped. I told them we could wait to put the Dexcoms on. I gave SugarBear a choice-we could put the Omnipod back on at 10pm or we could do Lantus and he could have another night and day without another device added on to his body. And Drago showered without checking his blood glucose first and put off changing his pump site out until the next day. Both boys ended up with their Dexcoms back on and SugarBear decided to put the Omnipod back on but it was their choice, I stopped pushing for my solid ground, I gave them theirs. <br />
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<br />Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com1tag:blogger.com,1999:blog-8494835342819833583.post-75058195665385046782017-05-17T08:24:00.001-04:002017-05-17T08:24:18.082-04:00Access isn't Equal"It's Day 2 of Diabetes Blog Week, with 105 bloggers officially signed up. Today we're discussing The Cost of a Chronic Illness.<br />
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Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?"<br />
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I didn't get to write this yesterday because SugarBear is sick. Fever, sore throat, roller coaster numbers, ketones, vomiting, feeling just awful. Today I have a moment, not because SugarBear is better he isn't, but because I'm staying home from work to care for him.<br />
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Insulin for pumps </div>
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Insets for t-slim pump for Drago</div>
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Cartridge and tubing for t-slim pump for Drago</div>
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Pods for Omnipod pump for SugarBear</div>
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verio strips for Drago</div>
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freestyle strips for SugarBear</div>
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verio lancets for Drago</div>
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freestyle lancets for SugarBear</div>
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Alcohol swabs</div>
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Unisolve remover </div>
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Numbing cream</div>
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Sensors for Dexcom for both</div>
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Transmitters for Dexcom for both</div>
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glucose tabs for both</div>
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glucagon for both</div>
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backup lantus insulin for both</div>
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backup pen needles and syringes for both</div>
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both cartridges and vials of novolog insulin</div>
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grif grips</div>
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skin tac</div>
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vet wrap</div>
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tegaderm</div>
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juice boxes</div>
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medical ids</div>
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food scale</div>
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ketone meters</div>
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ketone test strips</div>
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glucose gel</div>
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zofran </div>
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kit bags</div>
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etc...etc...etc...</div>
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Supplies, supplies, supplies. Diabetes is expensive, even with excellant insurance. But we are thankful we have it. But the US falls somewhere in the middle when it comes to access to all of this. Some countries, like England, insulin is "free". And access to insulin in third world countries can be awful. </div>
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Some care choices in the US for those that have access issues can be devastating. Everything from "stretching" insulin to not changing your insets regularly can have major consequences, not limited to whether one lives or not. At the moment we are lucky but we still have to fight for more insulin, Dexcom supplies, or even enough test strips. I wish insurance didn't dictate care. </div>
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The pic above shows just a few of the supplies we are lucky to get. In some places people don't have even this, making it almost impossible to really care for someone with T1. I can't imagine complications happening so early because access isn't there. I just recently listened to a Juicebox podcast Love and Charity in London by Scott Benner where he interviews Elizabeth who started T1 International. It is fantastic. And it brings to point that access isn't equal, and it should be. </div>
Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com1tag:blogger.com,1999:blog-8494835342819833583.post-40553359349378646142017-05-15T20:12:00.001-04:002017-05-15T20:12:28.391-04:00When you get more than you expectedDiabetes Blog Week Monday prompt:<br />
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"Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one's, life that you never could have expected? (Thank you, Heather, for inspiring this topic!)"<br />
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Hmmm, there are no rulebooks for life. And very little with diabetes makes sense. Although when my oldest was told this past november that he has gastropareisis he did say "Well, that makes sense. No wonder I can't prebolus and when I do I go low." Anyway, there are always good things even in the worst.<br />
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When SugarBear was diagnosed with Type 1 I couldn't imagine the good things and then when Drago was diagnosed I realized that even in this most awful space where both of my only biological children have this disease I could find the unexpected. Drago was diagnosed 3-3-15 and in a very short while we were seeing benefits to having a second child diagnosed. Drago is older (by four years) than SugarBear and up until SugarBear was diagnosed with Type 1, Drago had always been the one leading the way. For a little over a year, SugarBear had something that set him apart, made him different. Then it was Drago's turn. In many ways it hurt more because we knew but it was also easier because we knew. But what was an unexpected surprise was the benefits for SugarBear. Drago got a Dexcom within a short period of time and all of a sudden SugarBear thought that would be okay. When Drago got his pump, SugarBear was intrigued and now he too is pumping. They encourage each other. They know. Another benefit before pumping if one boy forgot his insulin pen there was always backup (even at a full day at the amusement park after a JDRF walk). Extra supplies another sort of benefit. When we run low on insulin (maybe because of insurance snafus which I would say are unexpected but never are) for one we still have insulin because we have a second person in the house with Type 1. <br />
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But how has diabetes brought unexpected good into my life? I'd say the biggest blessing has been the people we have met on this journey through JDRF as well as just connecting because "we know". I've met people with Type 1 in my community and online, at JDRF summits and because we connect on something that many just can't comprehend. I've gotten even better at computations and have grown fond of numbers. I've gotten a new appreciation for life and a perspective that allows me to keep going. Type 1 colors everything in every color. I've grown because of what our family is going through. I've found the unexpected because the unexpected found me. <br />
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Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com3tag:blogger.com,1999:blog-8494835342819833583.post-85910894393683679592017-01-26T18:28:00.002-05:002017-01-26T18:28:40.609-05:00ContemplationYou know how it feels when you have a tiny itty bitty pebble inside your shoe? You can't take the shoe off yet so as you walk you squish your foot around hoping to move that annoying piece away from the most delicate parts of your foot but it keeps moving anyway. It might cause some bruising and maybe even a cut or blister that could lead to infection. It always causes some sharp pain here and there and definitely is distracting. But what a relief it is when you finally get to take your shoe off and remove the tiniest sedimentary fragment you've ever seen. It might even make you think of the Princess and the Pea. Maybe you'll admonish yourself for being so sensitive. Maybe you won't even give it a second thought. We'd like to remove the pebble from our shoes, please. The longer it moves around in there the more likely it is to cause issues. That is diabetes, Type 1 and Type 2. And we need a cure.<br />
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Autoimmune: your own body decides to attack itself but it's not like a dog chasing his tail, real damage happens. Organs no longer have the ability to function the way they are supposed to. Both boys lost their beta cells in their pancreas, the ones that produced insulin. (Type 1 Diabetes) Both boys are losing pigment in their skin. (Vitiligo) Drago has also been diagnosed with G.E.R.D. (Gastroesophageal reflux disease) and Gastropareisis (delayed emptying of the stomach). And Sugar Bear's thyroid has been under attack for a year from his own body (Hashimoto's) and has just lost the war (hypothyroidism). Today at our endo appointment we found out that his TSH level was 16! (Normal is around 3). Today he'll start taking more medicine he'll have to take for the rest of his life. I got tears in my eyes but my Sugar Bear said "I was just wondering when I was going to have to start taking medicine for that. At least it's not a needle. I can just make it a habit." A lifetime. A pebble. <br />
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Looking at my posts last year, I noticed that my last in October was just a sort of summation. It really didn't say much. I have so little time anymore. The end of October had us visiting an art museum to see a Van Gogh exhibit with my Mom while my husband was in New York for his Uncle's funeral. And it was also Halloween. We didn't go Trick or Treating for the very first time this year. Sugar Bear decided he wanted to hand out candy instead. My boys are growing up so fast! A blink and they are both young men.<br />
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In November I had to give CPR to a neighbor that unfortunately didn't make it. It threw my world into a bit of a spin. I still went to the JDRF summit but was in a state of shock, it wasn't the refuel it usually is and that I needed. We had a very quiet Thanksgiving at home. Drago had decided that Thanksgiving is just too many carbs and makes him feel awful. We also had another EGD done on him that showed GERD is still an issue and added Gastropareisis to his growing lists of diagnoses. Stomach issue and diabetes are not friends, it makes everything even more unpredictable. <br />
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And December had me at the JDRF awards as well as having a quiet holiday at home. We like quiet. It lets us relax as much as we can. <br />
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This month has had us doing some new things. Sugar Bear has started on the Omnipod pump, just in time for his 12th birthday! He has only been at it for a little less than two weeks but he loves it. He has been amazing with it. Even wearing it on his legs and belly. Every day he impresses me. <br />
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The company I work for had our employee party this month and for the very first time since diagnosis (3 years) someone besides family (hubby's parents or my Mom) or diabetes camp had the boys over so we could go out without too much worry. It was so freeing! Every once in awhile you forget about that pebble and it almost reminds you of how it would feel to take the shoe off.<br />
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So back to the endo appointment today. We love our endocrinologist. We love our nurse. We have some work to do with Sugar Bear, his A1c is the highest it has been since diagnosis, of course he's been sick with strep recently, but still. Drago's A1c is still fantastic. Both boys have areas to improve, who doesn't. And we were almost out of the appointment when our Doctor got the thyroid test results. I don't know why it took my breath away. It's not like I didn't know it was coming or that we can't handle it. I think it's like that pebble, it hit a soft spot. Another precious organ lost the battle.<br />
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<br />Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-39824416630712902462017-01-14T07:21:00.001-05:002017-01-14T07:21:13.095-05:00Juicebox podcast #92<a href="https://www.blogger.com/"></a><span id="goog_1304492200"></span><span id="goog_1304492201"></span><a href="https://www.blogger.com/"></a><span id="goog_2102461075"></span><span id="goog_2102461076"></span><a href="http://www.ardensday.com/juicebox-podcast/jbp92tornado" target="_blank">I'm on a podcast</a><br />
<br />Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-54965634094188025422016-10-18T10:40:00.001-04:002016-10-18T10:40:06.422-04:00Keenly ExquisiteI've let three months go with no explanation. I always have thoughts about what I could blog. My brain is always churning. Motivation is there but follow through has been crap. In a vague summary of our life these last three months in one word--exquisite. <br />
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July--the boys went to diabetes camp for the second year. They even had a better time than last year but Sugar Bear unequivocally said he will not return. He followed it up with "If I say I want to go you should check my sugar 'cause I'm probably low."<br />
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September my husband and I celebrated 19 years together and I did an interview with Juicebox podcast that will be posted when he releases it. And Drago turned 16 and will be getting his learner's permit soon. I already have more gray hair.<br />
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October found me getting more shots for my four crapping back discs. And we had our most successful walk in our hometown. We raised almost $10,000 in great part to my in-laws who came and walked with us. We had our biggest team--17! Of course hubby didn't get to walk and Sugar Bear took a nasty fall on hard concrete before the walk and was devastated he couldn't participate due to his injured knee.<br />
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We also had an endo appointment in July (best yet) and October (worst so far).<br />
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And through it all diabetes weaves. Missed lantus doses, too much insulin, activities, stress, illness, and all. It never sleeps. <br />
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<span style="text-align: start;">T1D is exquisite.</span></div>
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<a href="https://4.bp.blogspot.com/-bl3VlG0Hu3w/WAYqeb0_CJI/AAAAAAAAEKo/SO3lm3Mlh5IbNzN-zi1ociqaPxjQpIbkACPcB/s1600/image.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://3.bp.blogspot.com/-XpI5xsZUUco/WAYqedlNvXI/AAAAAAAAEKo/SmEBZJ9a8y03NuqJyT_L1vBdx-eiqm4QwCPcB/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-XpI5xsZUUco/WAYqedlNvXI/AAAAAAAAEKo/SmEBZJ9a8y03NuqJyT_L1vBdx-eiqm4QwCPcB/s320/image.jpg" width="213" /></a>Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com1tag:blogger.com,1999:blog-8494835342819833583.post-87354012638234605492016-07-18T08:47:00.000-04:002016-07-18T08:47:12.830-04:00Connecting<div class="separator" style="clear: both; text-align: center;">
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Another JDRF walk done. More funds raised for tools and research on cures and prevention. More people than I've ever seen at one of these events confirming we really are not alone in this. There are many times, more than I'd like to think about, where we feel so alone and adrift with this disease in our two boys. The severe persistent lows, the highs that seem to last so long, the illnesses that make managing even more challenging, they all make us feel like we're in the middle of that ocean by ourselves but we really aren't! That is such a good feeling, to know that this community is there, that we have a family that gets it, that we have friends for support.<br />
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This year my Mom walked with us for a second time and the rest of the team was made up the four of us and of people who had never walked--another Type 1 Mom, her Type 1 son my youngest met at Diabetes Camp last year, and a coworker of mine. Not a large team but we had a blast! It rained during the walk, but that didn't deter us. Honestly, I think it was the best walk yet. And afterwards, Sugar Bear, his friend from camp, his Mom, and myself stayed to play at the park. Hubby and the teen and my Mom headed home. <br />
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Playing at the park was fun and we stayed a lot longer than we have previously. Sugar Bear loves the bumper cars and rode them over and over and over again. We didn't really ride the big rides this time which was fine with me. (My back can't really handle that anymore.) And of course Sugar Bear's dexcom fell off so we sort of flew blind which ended up having him have a pretty severe hyperglycemic moment. But it's all a balance. <br />
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<br />Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com1tag:blogger.com,1999:blog-8494835342819833583.post-42890884249618447092016-06-03T09:21:00.003-04:002016-06-03T09:25:39.883-04:00ChangesTomorrow is our JDRF walk. Can't wait. It's a different walk route this year. And we entered our t-shirts in the contest. You can go here to vote for ours. <a href="https://swojdrf.wufoo.com/forms/tshirt-contest-voting-jdrf-one-walk-kings-island/" target="_blank">https://swojdrf.wufoo.com/forms/tshirt-contest-voting-jdrf-one-walk-kings-island/</a> Ours is Team M.D. (#14). We will have four T1s walking, our two boys and friends we've made on this journey.<br />
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It's been a challenging week with some severe lows. The Dexcom has saved us from using the glucagon but we did get close with Drago. We've made some pump setting changes and everyone finally got some rest last night. School is finally out, maybe we can finally boost Drago's immune system. We also found out this week that one of my husband's best friends had their middle child diagnosed with Type 1. It's been crazy. <br />
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<br />Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com1tag:blogger.com,1999:blog-8494835342819833583.post-73410829976220130592016-05-19T11:18:00.002-04:002016-05-19T11:18:34.490-04:00I'd Rather Be a Jingle DancerDay 4 The Healthcare Experience<br />
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!<br />
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Oh boy. Insurance, healthcare, insurance companies, third parties, doctors, nurses,health care advisors all seem to equal judgement. <br />
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With two Type 1s and a Type 2 in our house we have had more than our fair share of jumping through hoops for health. When Sugar Bear was first diagnosed we had to "fight" to get enough test strips to keep him safe. We've also dealt with running out of insulin, having the Dexcom covered for one child but not the other until further appeals (same insurance!), delayed delivery of medical supplies from the third parties, misdiagnosis of health (big one!), brush off from doctors, etc..etc..etc...And we've only been at the Type 1 diagnosis for a little over two years. <br />
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I don't know how these could all be fixed. A dialogue is most definitely needed, starting with educating the health care professionals and doctors so that diseases are not missed and parents knowledge and/or instincts aren't brushed off. Insurance companies need to not be able to overrule doctor's prescriptions. Schools need to follow doctor's orders and 504s and IEPs. School nurses (yup, in some schools they actually have these) need to be knowledgeable and compassionate and non judgmental. Schools need to have school nurses. Insurance companies shouldn't dictate what kind of insulin or meter or pump one "gets" to use like it's a luxury. Life saving supplies should never, and I mean ever, be late or denied because doing so can kill someone! And when you see more than one healthcare professional they should all communicate with each other like a team. You know, a team that has your best interests in mind. The endocrinologist, the pediatrician, the GI doc, the nutrionist, the neurologist, the dentist, the psychologist, and the optometrist (all my oldest son's doctors and they are all in the same facility) should be meeting with each other to be on the same page. It is very discouraging to take him to the pediatrician where they seem to know very little about his GERD or Type 1. <br />
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I have shed some frustrating tears and some choice words over the hoops we've jumped. The day Drago was diagnosed the pharmacy where we get Sugar Bear's insulin didn't have insulin stocked. It didn't have insulin! Luckily we had some already and could drive a half hour away to another pharmacy where there was some available. The medical world is fraught with frustrations.<br />
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We've all become hoop dancers even when we'd rather be jingle dancers. (For those unaware, hoop and jingle are native american dances. Google both. They are amazing.)<br />
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<br />Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-36437074968477611412016-05-19T10:02:00.001-04:002016-05-19T10:02:08.958-04:00Be Specific and Choose WiselyDay 3 Prompt<br />
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.<br />
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It's something like 92% of those with diabetes are Type 2 and about 6-8% are Type 1. Both have issues with their pancreas. Both have highs and lows. Both have the cloud of complications hanging over them. But they are two totally different diseases with the same descriptive word, diabetes. Words have power. They have power to harm. They have power to help. And they certainly have power to confuse. <br />
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I've always been big about communication being important. I love language, always have, but I am so tired of language being used to generalize and stereotype and judge. And for me the worst offenders are the ones who could use their language for improvement. My Mom always said if you don't have something nice to say then don't say anything at all. I would add to that if you don't know what you are talking about then don't say anything or make jokes about it, especially if you are reaching a wide audience, and definitely if that joke might hurt a child. Your words make changes happen or not happen. And in a world where babies and children develop Type 1 the information and jokes you make might even cost someone their life. <br />
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When Drago was diagnosed he struggled emotionally. He was 14, had watched his younger brother almost die being misdiagnosed before diagnosis as well as witnessing and care-taking the highs and lows for a year and a half. It it him hard. So hard we put him immediately into counseling. Counseling was terrific for him. His counselor was also a Type 1 and there were many discussions on the power of words, everything from how to handle insensitivity of those that don't understand to how the words you choose for yourself carry a lot of weight. For example, instead of saying "I'm going to go stab myself" when it was time for a shot (his exact phrasing) switching it to something a little less negative like "I'm going to go take my insulin" made a huge difference. It changes your outlook. Positivity replacing negativity was huge in helping him come to terms with his diagnosis. That's not to say we don't joke and have some dark humor days but we see when humor is necessary and we work towards using positive words. In our house it is "Have you checked your blood sugar?" instead of tested. Testing for us brings anxiety and negativity. We also tend to use "he was diagnosed with Type 1 autoimmune diabetes" versus "he is diabetic". Why do we get so specific? Because of the generalizations and stigmas associated with the word diabetes, that's why. I see it regularly on people's faces when I say diabetes. It's almost like "oh, is that all" and "what did you do to cause it" kind of look. It's how people assume that eating too much sugar is automatically the reason. That diet changes will make it miraculously go away. Or that children will outgrow it. But one of my least favorite responses "Is that the bad kind?" Is any kind of disease a good kind? Seriously, not cool.<br />
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So to wrap this up, sugar doesn't cause diabetes (not gestational, not MODY, not LADA, not Type 1, not Type 2, etc.....) and continuing to put it out there that it does confuses people. It makes people brush off symptoms. It causes children to be misdiagnosed. Generalizing with words causes lives to be lost. Words can hurt. Choose wisely.Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-2051721222580332016-05-18T04:16:00.003-04:002016-05-18T04:16:51.770-04:00The Scream<b style="color: #755a2a; font-family: 'PT Sans'; font-size: 16px;"><b>Click for the </b><a href="http://www.blenza.com/linkies/links.php?owner=dblogweek&postid=13May2016a" style="color: #78ab46;" target="_blank">The Other Half of Diabetes - Tuesday 5/17</a></b><b style="color: #755a2a; font-family: 'PT Sans'; font-size: 16px;"> Link List.</b><br style="color: #755a2a; font-family: 'PT Sans'; font-size: 16px;" /><span style="background-color: white; color: #755a2a; font-family: 'PT Sans'; font-size: 16px;">We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)</span><br />
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<span style="background-color: white; color: #755a2a; font-family: 'PT Sans'; font-size: 16px;">Day 2 and already a little late, the story of my life. It seems no matter how much I prepare, organize, get things ready, things slip. It's the nature of life, and it truly is the nature of Type 1. We talk a lot about the highs and lows and possible complications. We talk a lot about the other autoimmune diseases that could pair up with this monster but mentally....that's a subject whispered barely audibly in a room by yourself. Have you ever seen the Edward Munch picture The Scream? Sometimes, many times, that is my mental state dealing with two kids with Type 1 and a hubby with Type 2. But on the outside I smile, I stay positive, I push forward one step at a time, one breath at a time. My husband likes to say that the boys' Type 1 is a very physically fit guy in the corner doing one-armed push-ups just waiting for you to let your guard down so he can get a good right hook into you. Just when you think you have this all figured out he hits. You can never let your guard down, and that is so mentally (and physically) exhausting and it contributes to guilt and worry and all those other emotions when it all catches up to you. (And it will because no one is 100% perfect.) And that is a recipe for burn out. And burn out lets that guy get the upper hand. And then those physical things we talk about become noticeable. </span><br />
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<span style="background-color: white; color: #755a2a; font-family: 'PT Sans'; font-size: 16px;">When Sugar Bear was diagnosed we were given a box with info inside but on the spine of the box it said this:</span><br />
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So what gets me through the tough moments, what phrases or mantras do I use.....I tell myself to <i><b>just breathe</b></i>. In through the nose, out through the mouth. Positive in, negative out. This disease is so taxing on everyone effected by it. It's grueling. It's a marathon and even in a marathon you have to pace yourself, stop and walk if you need to, stop and catch your breath if it all gets to be too much. And go ahead and scream. Let it out. Better out than in because then you can go on. Keep putting one step in front of the other. Every day, every moment is a new day and a new opportunity for you to get the upper hand, for you to kick butt. For me, some days music helps, most days humor is my best friend. But always, always I'm reminding myself to center, to breathe, to listen and to know that this too shall pass and then it'll be the next moment, the next breath, the next step. It's not easy, actually it's rarely easy. If one of the boys is high, one is low, and hubby is high or maybe all three are high and I'm tired, I'm always tired, it can be an ingredient list for disaster. This disease is emotionally draining, you have to find your recharge mine is recognizing to just breathe.</div>
<span style="background-color: white; color: #755a2a; font-family: 'PT Sans'; font-size: 16px;"><br /></span>Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-10586011432176898452016-05-16T06:45:00.001-04:002016-05-16T06:49:41.698-04:00Our Experience<span style="background-color: white; color: #755a2a; font-family: "pt sans"; font-size: 16px; line-height: 25.600000381469727px;">Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, </span><a href="https://unexpectedblues.com/" style="color: #78ab46; font-family: 'pt sans'; font-size: 16px; line-height: 25.600000381469727px;" target="_blank">Heather Gabel</a><span style="background-color: white; color: #755a2a; font-family: "pt sans"; font-size: 16px; line-height: 25.600000381469727px;">, for this topic suggestion.)</span><br />
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<i>Diabetes blog week is here! This past year has flown by and outside of two kids still living I feel like we haven't done much. I know we actually have it's just difficult to see exactly what sometimes. Anyway, here's todays prompt and check in again tomorrow. I'll be here all week!</i><br />
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<span style="font-family: "pt sans";"><span style="background-color: white;"><i>Hmmm, what is the most important diabetes awareness message to me? Why is it important? What am I trying to accomplish by sharing on my blog? I started writing this blog after Sugar Bear was diagnosed. It originally was to help me heal emotionally. To wrap my brain around my thoughts and try and make sense of everything. His diagnosis was a traumatic experience. It hurt. We grieved. We felt so alone and scared. It blind-sided us and we could have easily lost him. Many children (and adults) don't survive or don't survive intact a misdiagnosis and ensuing severe DKA. Somehow we got lucky. Somehow. Somehow I got to keep my baby. Why? How? These thoughts floated through my heart and brain in the weeks after our experience. How could we have prevented what we went through? What would it take to keep someone else experiencing what we did? And while I was struggling with these questions and getting our feet back under us I was exploring and researching the internet and stumbled upon the diabetes online community (D.O.C.). Wow, a club had I known existed I never would've wanted to join but so thankful they were there. They had been where I was. There was a well worn path. They welcomed me and lifted me up. I found friends. I found people who understood. And with it I found my voice.</i></span></span><br />
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<span style="font-family: "pt sans";"><span style="background-color: white;">I blog our experience because it is still fresh. We haven't been at this that long. And maybe our experience will be a lifeboat for those newly diagnosed. And maybe our experience will educate those that know nothing or very little of this life. And maybe our experience will change the world. That is what I want most of all. I don't want our community to lose another Kycie, or David, or Hailey, or Reegan from misdiagnosis. I want awareness and education. I want to teach and help. I want the world at large to know this isn't caused by diet (not even sugar causes it) and that those comments hurt. And they are misguided. I want pediatricians to take parents seriously when they know something is wrong but because the parent doesn't have the extensive knowledge we rely on the professional to figure it out and it's not okay to tell us it's just a virus/strep/etc...because those brush offs do cause harm and in the medical world that is not okay. I want TV shows and advertisers and journalists to get it right because the </span>world is listening and you are educating even if it is wrong information. I want to encourage, to educate, to advocate, and to continue to find my way because my children and yours are important. They are our world, our future. They deserve our best.</span></i><br />
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<br />Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com9tag:blogger.com,1999:blog-8494835342819833583.post-9937120084224079892016-04-29T11:17:00.002-04:002016-04-29T11:17:53.108-04:00SuperheroesDrago made it to school for three days. Today, he is once again sick.<br />
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Wednesday at work I once again got to tour the local Children's Hospital for our fundraising in May. It made me think on so many things, from Sugar Bear's diagnosis to Bow tie Boys challenges. I went back and reread my post "where the ceiling meets the wall". Certain memories are engraved so deeply that even with time they don't heal completely. I'm just grateful we survived and are surviving. <br />
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Wednesday night I started feeling crummy. Yesterday was my day off and I spent the whole day mostly on the couch. I feel like I have the flu. My kitty, Ricky, took care of me all day. <br />
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It was a challenge to take care of the boys needs too. It never stops. Diabetes doesn't care. Sugar Bear had a high in the 300s yesterday with ketones and Drago bottomed out with lows. When they finally were both "stable" around 9pm I could finally sleep for an hour. Then it was Lantus time for Sugar Bear. And the merry go round continued. It doesn't end and honestly i don't want it too because when it does end it'll mean either my boys have grown up and moved out and are doing this all on their own or they are gone. Right now both of those thoughts are just not where I want to be or where I am. Silver lining, I do what I do because I love these boys so very much. They are my superheroes.Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-40330836234040071782016-04-27T09:34:00.000-04:002016-04-27T09:34:02.468-04:00a poemEat!<br />
Why?<br />
Low!<br />
So?<br />
I don't wanna<br />
Ya gottaSparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0tag:blogger.com,1999:blog-8494835342819833583.post-59575897183662310442016-04-26T09:51:00.001-04:002016-04-26T10:13:19.516-04:00WeakDrago has been sick with the stomach flu for a little over a week. Just awful. He went back to school today but he isn't 100%. Well, I guess, really when is he? His immune system seems to pick up every bug going around. He just can't seem to get a break. The good news is the pump made his illness "easier". It's always a balancing act and even more so when they are sick. <br />
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We got to hear Lauren Sivewright talk about her experience in the artificial pancreas trials. It is so hopeful. Both the boys didn't want to go, but after listening to her they were so excited. Sugar Bear was constantly whispering in my ear about how we "have to get this", this coming from the boy who is hesitant to have devices attached to him. But the thought of more "normalcy"....it brought tears to our eyes. Unless you live this it is really hard to describe the invasive nature of this disease, it colors everything. <br />
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We are in full swing of fundraising for our walk. I can't believe this will be our 5th walk for JDRF, our 3rd with two Type 1s. Every little bit we raise goes towards these innovations like the artificial pancreas that will make my children's lives so much better. I don't know if we'll ever see a "biological cure" but strides are happening that give me hope. And hope is really all we have.<br />
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I don't cry as often about my boys and their disease anymore but this past week got the better of me. Everyday is such a fight and some days it is all out war. And sometimes we feel so alone with it. It's hard on my relationship with my husband. It's hard on my relationships outside of our immediate family. And it takes a toll on all of us. The days and nights blend together because this disease doesn't rest. We're exhausted. Our brains are foggy. It is so challenging to keep functioning, to keep putting one foot in front of the other, but we do. We have to. I look at my boys and I see bravery, courage, determination. They are my heroes. There is no flinching with finger sticks. No grimacing with injections. And don't think for a minute these things don't hurt or you get used to it, well maybe you do somewhat. You definitely build up scar tissue on the fingers. Anyway, I always ask afterwards and they always give me a number on the pain scale, sometimes lower but many times 5 or above. This disease isn't for the weak. Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com5tag:blogger.com,1999:blog-8494835342819833583.post-79816156340084984502016-04-15T09:45:00.002-04:002016-04-15T09:45:36.622-04:00How long do You have to WaitOur life always seems a bit crazy. We have had so much going on this year that it has been challenging to stay positive and on top of things. <br />
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Besides the things I have written about, I had my own health "scare". In January I found what I thought was a breast lump. My family doctor referred me to a surgeon but it took until the middle of March before I could see him. He sent me for a diagnostic mammogram and ultrasound. It turned out the "lump" I felt was really nothing but there was a non-palpable mass elsewhere that required a biopsy. I had my biopsy last Friday and am happy to report the mass is benign, but that waiting.....that interim between appointments and information....that was brutal. My Mom's boyfriend of 12 years is going through colorectal cancer right now and after his surgery has found out it is worse than previously thought. And there is so much waiting and thinking and space that it is more than challenging.<br />
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Drago started the pump this past month and that has been a whole new learning curve but is going well. Yesterday both the boys had their lab draws and three month endo appointment. Sugar Bear's TSH is elevated again and he has thyroid antibodies and we are once again waiting until the next appointment to do more labs. It is just a matter of time at this point before he'll need to go on medicine for another autoimmune disease. Good news is their HA1c's were fine and BMI's were even better.<br />
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I've gotten more involved with the research end of JDRF and even had a very bit appearance on a local TV show. I'm constantly learning to fill up that waiting space for the cure.<br />
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There is a lot of hurry up and wait. It's all a test of patience from a blood glucose checks that show a low and you treat and then wait, to the highs you treat and wait. When you wait long enough you see change. I believe the diabetes world has waited so long and is on the verge of seeing great changes. It lets me hope while we wait.<br />
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Until next time, try and enjoy your wait.Sparrowminhttp://www.blogger.com/profile/01329883354600958869noreply@blogger.com0