I know what the FDA will say and I don't care

I've been sick since last weekend. It's mostly a head cold but it tried really hard to get into my lungs, I was able to fight it off and am feeling better today, but that's not the story.

Three nights ago it hit me the worst, I wanted, no I needed to sleep, but Arden'sBG was high and being very stubborn so I wasn't able to until about 2:30 am. On a day when I wasn't sick I'd take 2:30 with a smile, but like I said, I wasn't feeling good and so it was tough. But I survived. With about five hours of sleep under my belt, the next day drug on. I was a bit of a wreck if I'm being honest and my cold was doing it's best to advance into my chest. I needed sleep badly now, so I guess you can imagine what happened.

Arden got the cold too, now I knew why her BGs were so stubborn. She stayed home from school and we were sick together. But that night, that second night of my three night tale of woe, it was rough. BGs fought me like a bull and I wasn't able to lay my head down for good until 4:38 am, but I still had to get up at 7:15 the next morning. Now my ass was officially dragging. Every time I tried to sit down yesterday my eyes would close so I stayed busy doing household chores. When the evening came Arden was feeling much better, she didn't get it as badly as I did thankfully and I was hopeful about her BGs and my chances for some overdue rest. 

Before bed last night Arden's BG was a respectable 123 on her CGM, 140 with a finger stick and I was smelling sleep. I stayed up for another two hours to make sure she wasn't going to drop unexpectedly and sometime around 12:30 am I set a temp basal restricting her overnight basal rate because I knew I was going to fall to sleep and stay that way. It makes me nauseous to admit this, but I was happy to trade a waking 190 for seven hours of sleep.

This is what I woke up to.

Now I know what the FDA will say to my next statement and I don't care. We need something to help us. After a while you stop hearing the beeps and feeling the vibrations. Other days you may just be too tired or sick to react. For all that continuous glucose monitoring brings to the daytime, it just doesn't cut it after we lay our heads to rest.

Arden's DexCom receiver, your DexCom receiver should come with a dock, maybe it's an alarm clock too. I should be able to buy a companion clock for my room, for our living room, there should be an app. F&%king alarms and whistles and lights should blare in my ears and shine in my face. Hell I'd wear a bracelet that shocked me when Arden's BGs fell too low. Give me a Rube Goldberg that bashes me in the face, give us something... anything.

Now I am quite sure that the manufacturers of CGMs understand how much an alert system of some kind is necessary and this isn't the first time that I or others have ranted on the subject, but I am tired of hearing that, "the FDA won't allow that". I don't give a damn that each piece of tech that you add to a process makes getting clearance nearly impossible, just someone get the nerve to try. Walk defiantly forward and try to break new ground. Please.

Do it before I die of exhaustion, do it before Arden dies in her sleep. Do it before it decimates another life, another family. Be bold so we can not just live, but live better. Look closely at the next picture. Study the graph and then look at Arden's little face in the shadows. Imagine all of the people living with diabetes that are tired, battling a cold or just would love, absolutely f&%king love, a decent nights rest and then do something to help them.

I know what the FDA will say, they may say that if the signal is carried by my home WiFi for example then my home WiFi would need to be verified so it's not possble. They may say any number of a thousand things, but I don't care. Tell me where to sign my rights away. I promise I won't sue anyone if my router happens to stop working on the night my daughter's BG gets so low that it harms her. I'll take the chance, it's mine to take. Stop restricting great ideas from seeing the light of day because of what might go wrong. Something is better then nothing. Right? 

Seat belts aren't 100% effective, I still wear one. Condoms can't promise we won't get sick or pregnant, but we wear them because it gives us a better chance. This isn't just an issue for young children and their parents. This is also about husbands and wives, boyfriends, college kids, it's an issue that effects every person with diabetes and all we want is a fighting chance. 

Medtronic found a way around the problem with MySentry. Sanofi figure out how to link an app with iBGStar. It can be done.

Here is my unsolicited message to every company that has an idea that they are afriad to move forward with because of government regulations: I know you are scared to approach the FDA with innovation, I get it, I really do understand. But I'm afraid to sleep. I'm afriad that my daughter is going to die. People are scared that their wives, friends, mothers, sons will fall to sleep one night and never wake up. We win, our fear is worse then yours. Help us.

Roche Social Media Summit 2012

The 2012 Roche Social Media Summit was a great example of the old adage that says, "patience is a virtue". Though I had never attended any of the previous summits with Roche it was easy to feel the earnest nature of the people that I was sitting with and that spirit was clearly being fostered by our hosts from Roche.

I bring up patience because the feeling in that room was due in large part to the extended nature of the relationship that Roche and the DOC have been nurturing for these many years. I was partially sad that I hadn't experienced the prior summits so that I could more personally appreciate the journey that this summit has been on. On the other hand, it was exhilarating to show up as the main act was coming on stage so to speak.

As always, when it come to things like this, if you want a detailed who said what or step by step breakdown of the day you are reading the wrong blog but if you would like to feel what I did during the time we spent together, read on.

I can't list every person that attended but I do want to say that they all fit together like a puzzle. Each one brought a specific perspective and when combined, the voices in the room had every aspect of diabetes advocacy covered. A number of things stand out in my mind that I'd like to share. The group is passionate, motivated and please forgive me for reusing a word but, earnest. The countless people that read diabetes blogs in search of support, advice and community are reaching into a very deep pool of knowledge that is being presented by people just like them who want to give back to the community. The diabetes knowledge that I saw was staggering. I count myself as a reasonably intelligent person but there were moments when people spoke extemporaneously about the health, political, and socioeco'nomically sides of diabetes in a way that made me feel like I wasn't operating on the same level as they are. Gathered were so many truly brilliant minds that I found myself wondering if thoughtfulness can be a side effect of insulin use. I'll have to check the package insert next time I open a box.

When guest speaker Josh Bleill spoke about his struggle to recover his will to live after loosing both of his legs while serving in the military, I thought the room couldn't get more silent. Then Josh compared the sharing of his story to our diabetes blogs and everyone in the room seemed to stop breathing for a moment. I remember that as Josh spoke I was struck by how amazing his story was but I didn't quite understand what it had to do with diabetes advocacy. When he connected the dots for us, I immediately felt pride. So many of you have written to say thank you for Arden's Day and I guess that I knew on an intellectual level how much my sharing meant to others but wow do it hit my square in the chest when Josh thanked us for telling our stories. He wasn't saying thank you because he has diabetes, he was saying it because he knows what sharing with such transparency means to others. He was thanking us for our service to the community when all we wanted to do was thank him for his sacrifice for all of us. Please know that every time you share your story with someone else about your life with diabetes, you are helping all of us to move forward.

During the day and a half summit everyone shared thoughts about their life with diabetes while we were discussing multiple issues. Once and a while someone would say something that actually served as a learning experience to the other people in the room. It was eye opening for me to see long-time veterans of life with diabetes make the face that said, "huh, I didn't know that". The moment that stuck with me the most, being a parent of a child with type I, was this...

Steve Richert from Living Vertical spoke to us on day two about Project 365 which is Steve's effort to empower people with type I diabetes through rock climbing. After Steve spoke for a while it became clear that he sometimes climbs by himself. One of the parents in the room began asking questions about how he stays in touch with family and wondered about his safety protocols. She was legitimately worried about Steve but as she spoke her concern manifested into the fear she has about her children and before anyone knew what happened, she was visibly upset. She must have put herself in Steve's mother's position and became overwhelmed by the concern that she feels for her type I children. The room got serious and in one of the silences I leaned into my table and told the people I was sitting with, "she just showed you what it feels like to be a parent of a child with type I...". There was no way to guess that Steve's talk aimed at helping PWD to feel like there isn't anything that they can't do would teach such an unintended lesson. 

The balance of my brief time in Indianapolis was spent getting to better know the other bloggers in attendance, we saw the manufacturing process that yields test strips, talked about products and spoke about how to improve our already wonderful community. It was time very well spent indeed and the experience has definitely helped me to further define the direction I want to take my advocacy and Arden's Day.

I don't pretend to know why the first Roche Summit came to be and I can't vouch for what's in others minds but the two men that plan and oversee this gathering definitely have the DOC in their hearts. I'm hopeful that I represented you all in a way that you could be proud of. 

If you are interested in a very detailed account of the summit I suggest Mike's at Diabetes Mine and David's at Diabetes Daily. Mike takes the best notes that I've ever seen and David types like a madman.

Disclosure: I attended an event hosted by Roche, who paid for my airfare, travel, hotel and meals while I was in Indianapolis with the exception of a bottle of water and bagel that I lost the receipt for.  

I'm off to Indy for the Roche #dsummit12

I'm pushing 'publish' on this post and then leaving for the airport to attend the fourth annual Roche Social Media Summit in Indianapolis, Indiana. This is my first Roche summit so I don't know for sure what to expect. If I had to guess, I imagine that not unlike the Lilly summit that I attended recently, I and some of my favorite DOC bloggers will be asking questions, making suggestions and advocating loudly for all people living with diabetes and their families. When I get back, you can be sure that I'll share my thoughts on the summit as soon as I am able.

If you have any questions, concerns or suggestions that you would like me to pass on to Roche or the other diabetes advocates present, please leave them in the comment section of this post and I'll be happy to bring them up.

Those of you on Twitter can follow any live summit tweeting that may come from me or the other attendees by tracking hashtag #rds12. If you aren't on Twitter, c'mon, get on Twitter. It's a fantastic social media hub that connects people just like you to others with similar interests, concerns and thoughts. I have found Twitter to be an indispensable tool in my journey with diabetes. The ability to connect, support and learn with other people that live the same life as I do continues to be a great source of strength and joy for me and I think you'd benefit from it as well. You can find me on Twitter @ArdensDay.

Okay enough of this, I have to get to the airport and fly to Indianapolis for a busy few days of diabetes advocacy! #excited #proud #humbled

disclaimer. Roche will be covering my travel, lodging and meal expenses related to the summit. Roche has not asked me to blog about the summit or in any way made me feel like I had to react positively to this trip or their statements and I don't expect that they will. Even if they did, Arden's Day and my thoughts have never and will never be for sale or trade.

2012 Blogger Summit at Lilly Diabetes

Social media is a powerful communication and connection tool. A message on twitter can reach countless people. FaceBook posts receive 'likes', get 'shared' and suddenly people that you've never met know that you support a cause, watched a video or have an opinion. Being connected in these ways is the new normal to those of us that live a part of our lives online and not surprisingly, companys have noticed.

I never imagined that writing about my life as a type I diabetes caregiver would lead to being invited to Lilly's first diabetes blogger summit but that is just what happened. I didn't know what to expect but I knew that the invitation felt like an oppurtunity to represent, as best that I could, the needs of our community.

It wasn't my intention to spend the day taking detailed notes or to report back to you that 'this' or 'that' was said. I wanted to experience the day, lend my thoughts when I thought that they would add to the discussion and see what good could come from the meeting for people like us.

I believe that businesses are mainly created to generate a positive cash flow and that there isn't anything wrong with a company making a profit. That's what my head thinks about buisness. My heart wants something different. In my opinion, companies that make a living in certain walks of life should do so with as much compassion for their customers as their shared situation allows. Making insulin, lancets and other diabetes devices is one such situation. From research and development to an attractive box on your pharmacy shelf, much goes into the development of safe and effective diabetes treatments and devices. I want the company that imagines and develops those things to be compensated. I want their employees to make a fair wage and I think their shareholders should see growth and sustainability. That again, is what my head thinks.

My heart feels that people living with a chronic illness shouldn't be looked upon as a constant cash flow opportunity even though they are. Companies that make the things that keep us alive need to be respectful of the backs that they make their profits on. They also should make allowances for the people that can not, in any way, afford the medications and devices that sustain their lives. It's the right thing to do.

A cynic may say that pharma companies invite bloggers like me to visit so that I'll leave with a positive view of their company, so that I'll write on my website that they are good guys that just want us to be happy. Well, I'm not a cynic but I do think that Lilly and every other company is beholden to their bottom line. The thing is, I didn't meet with a company last week, I met with people that work at a company and these people hold geniune concern and compassion for the diabetes community and the people that make it up. I'd like insulin to be cheaper but I also need for it to remain available. Therein lies the balance that I hoped to see when I visited Lilly and I did.

The building was steeped in tradition but the people inside, the employees, they were focused on today. Something amazing is happening right now in pharma as it relates to consumers. For the first time perhaps, they see the value in us as people and that's a good thing for us. We are no longer customers, never again to be thought of as patients - we are people. We can't and shouldn't blame pharma for taking so long to come to this seemingly obvious conclusion... they didn't know us until recently. How did they finally come to make our acquaintance? Social media introduced us.

Social media is how and why this summit came to be, it gave us all a name and a face, it's how we went from being customers whose dollars were coveted to people whose health outcomes are now followed with great interest and dare I say, real concern. Lilly wants to connect with us and even though I realize that many of you will meet their interest with skepticism, I say that we should embrace this new turn. As long as we continue to ask hard questions as a community and demand that our voices be heard, this new and direct connection to the companies that produce our diabetes supplies should and will be a mutually beneficial one. I'm optimistic and interested to see where this new sensibility takes us.

I'll be talking about the particulars from the day in my next few posts.

Hope you are all well!

Disclosure: I attended an event hosted by Lilly Diabetes, who paid for my airfare, travel, hotel and meals while I was in Indianapolis.

Update on 2012-06-01 15:48 by Scott Benner

You can find my continuing thoughts from the blogger summit here.