{"id":37124,"date":"2014-11-01T14:46:29","date_gmt":"2014-11-01T18:46:29","guid":{"rendered":"http:\/\/asweetlife.org\/?post_type=feature&p=37124"},"modified":"2016-01-11T06:13:05","modified_gmt":"2016-01-11T11:13:05","slug":"how-the-diabetes-online-community-saved-me","status":"publish","type":"post","link":"https:\/\/asweetlife.org\/?p=37124","title":{"rendered":"How The Diabetes Online Community Saved Me"},"content":{"rendered":"

\"Alexis<\/a><\/p>\n

At the age of six, my son J was diagnosed with sudden onset Type 1 diabetes. He went from having no symptoms of diabetes, to\u00a0DKA<\/a>\u00a0within 48 hours. We\u00a0had just traveled from Las Vegas to New Jersey to visit family.\u00a0Later that night after the flight, J was thirsty.\u00a0It was a thirst that could not be quenched.\u00a0Then\u00a0twelve hours later\u00a0came vomiting and stomach pain. \u00a0We all assumed he had a bug from the flight. When I went to wake him up the next morning, I knew it was no little stomach bug.\u00a0J\u2019s\u00a0speech was slurred, and he could not stand on his own. I wrapped his body in a blanket, called 911 and\u00a0we\u00a0were rushed to the ER. It took the\u00a0ER nurse\u00a010 seconds flat to smell his breath, recognize the fruity odor of ketones, and say, \u201cWell,\u00a0he is diabetic, isn’t he?\u201d At that moment, our whole world came crashing down.<\/p>\n

We spent a week\u00a0with J\u00a0in ICU, and in training. We were taught how to give shots, check blood sugars, count carbs, and everything else that we needed to know. We were told he could still be a normal kid, and it was just a matter of time before we would\u00a0all\u00a0adjust.\u00a0In time,\u00a0we did get better. We adjusted. We learned. We navigated.\u00a0But\u00a0we were never truly confident. My hands shook every\u00a0time I gave J a shot, or checked his blood\u00a0sugar. We didn\u2019t really know about complications and\u00a0the\u00a0ramifications of lows, and what\u00a0DIB (dead in bed)<\/a>\u00a0was, or how easily things can go bad.<\/p>\n

\"Alexis<\/a><\/p>\n

We just\u00a0went about our day, checking blood sugar, counting carbs, and\u00a0injecting insulin, without truly understanding what\u00a0we were dealing with.\u00a0I didn\u2019t know that I wanted my child\u2019s A1c to be\u00a0under 7%\u00a0or that I needed to check\u00a0blood sugars\u00a0in the middle of\u00a0the night, or that I would need a\u00a0504\u00a0plan<\/a>\u00a0to ensure he was treated fairly.<\/p>\n

Everything changed when\u00a0I found the\u00a0Diabetes Online Community (DOC)\u00a0in 2009 via Twitter. I started to tweet about J\u2019s\u00a0day, and blood glucose levels, and found that others\u00a0did the same. There was a\u00a0community of\u00a0people out there, just like us, that understood what we were going through.\u00a0I was able to start asking questions, learn about post-prandial spikes,\u00a0insulin\u00a0pumps, CGMs, ketones, and so much more. After almost two years of my child living with\u00a0Type 1\u00a0diabetes, I felt like I was being educated\u00a0for the first time. I am thankful everyday for that first\u00a0retweet\u00a0I got, which led me to find my second family and my place in the amazing DOC.<\/p>\n

\"J<\/a><\/p>\n

We\u2019ve sometimes felt isolated, like we don\u2019t belong in the world of \u201cnormal\u201d families. \u00a0Being able to turn to another parent of a child with diabetes, or an adult with diabetes and hear “me too” was life changing. I slowly came out of my diabetes shell, and gained both more confidence, and knowledge.<\/p>\n

When J first started his pump, all I heard from the doctors and reps was how amazing it is, and how much freedom J would have. No one warned me the mishaps that can occur with insulin pumps. I found out the hard way.<\/p>\n

One day, J’s sugar wouldn’t come down, and his ketones were climbing. I didn’t know what to do. We had just gone swimming, and since I\u2019d been told to take his pump off because J wouldn’t need insulin for swimming, that\u2019s what I’d done.<\/p>\n

Feeling angry and scared, I went to Twitter. I was ready to throw the pump in a drawer and go back to injections. Then minutes after my Twitter rant, one of my followers called me. She explained that not all kids can be without insulin for a long period, even if active. She told me about using blood ketone strips instead of urine. Most of all, and what changed me forever, was when she said, “You got this. I’m here and we will fix it together.\u201d We did.<\/p>\n

At that moment the cloud of despair, the feeling of loneliness, and the panic, were gone.<\/p>\n

\"Alexis<\/a><\/p>\n

Later, the same friend saved me a second time when the emotional toll of taking care of a child with diabetes was weighing me down. I was a on a ledge. I felt like giving up, like quitting not just the pump, but ever trying anything new or learning anymore.<\/p>\n

She didn’t let me, and guess what? I am now that someone for another newly diagnosed family out there. I am now able to be that beacon of hope for someone else.<\/p>\n

I don’t panic anymore when there’s an unexplained high. I am able to tackle breakfast spikes with confidence, schedule basal testing, and demand fair and equal treatment for my son in school, all while keeping him safe. I am training new families on 504s. I’m able to give back, all that I got when I was first starting out.<\/p>\n

If it weren\u2019t for that one tweet in April of 2009, I might still be lost. More importantly, I wouldn’t be able to do the work I do to help others. The Diabetes Online Community is always there for me, whether it’s a question about something we never encountered before, a virtual hug or high five.<\/p>\n

312 weeks. 2190 days. 52,560 hours. 3,153,600 minutes. Six years: that is how long my child has lived with Type 1 diabetes.\u00a0\u00a0That is how long we have pricked his fingers, pierced his skin,\u00a0watched\u00a0and cared for him as he experienced ravaging highs and debilitating lows.<\/p>\n

That is how long my family has been doing its part in making life better for people with diabetes. That is how long we\u2019ve been waiting\u00a0for a cure.<\/p>\n","protected":false},"excerpt":{"rendered":"

I was able to start asking questions, learn about post-prandial spikes, insulin pumps, CGMs, ketones, and so much more. After almost two years of my child living with Type 1 diabetes, I felt like I was being educated for the first time. 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