Reblogging: A window of opportunity is closing.

I am reblogging on a very important matter.  Everyone needs to act on this! I added my comments, will you please do the same.  It takes 2 minutes!  There are now 177 comments.  PLEASE add yours for me, my brothers, my uncles, my aunt, my cousins, my friends, your family members, your loved ones.  WE all need this support!

http://happy-medium.net/2014/03/21/a-window-of-opportunity-is-closing/

Your category would be individual consumer, a few people were confused on what to choose.   Or at least that is what I chose.

03/27/2014: There are only 201 comments on there now.  How many Diabetic's are in this country and there are only 201 comments!!  PLEASE leave your comments, we NEED this! 

APRIL 7th is the DEADLINE TO COMMENT!!

"FDA has proposed new meter accuracy guidance.  They are open to our views and have two dockets to take comments on the draft guidance, before they become final rules. These dockets are a unique opportunity where the FDA is focused on listening – we need them to hear us. The current rules for glucose meters date back to 2003. If that is indicative of the frequency of rule making, it may be another decade before we get another chance to help shape the future of meter accuracy.
Let’s make this count. We only have until April 7th.
The number of comments matters. The more FDA gets, the more the diabetes community will be heard. Other interests will lobby for their views. We must speak up for our health. Our lives." http://www.stripsafely.com/sample-page/guidance/

My blog list isnt working

So the list of blogs I follow is not working on my page today.  I dont know how to fix it either, no matter what I do they wont show up.  Please bear with me, hopefully later today I can get it to work. 

Do you ever wonder?

Do you ever wonder if some day you wont have to take insulin from a bottle?

Do you ever wonder if people will stop making rude comments about your Diabetes? Oh you have the bad kind of Diabetes? No type of Diabetes is good last time I checked, why is it ok for people to say that to me? If someone has Cancer, do you say oh you have the bad kind, like any Cancer is ever good? I'm so exhausted from the hurtful comments from people. I have a tough hide on me but after the 20th time in one week, inside I really just want to break down and cry and say yes, I have type one Diabetes and no I don't need you to point out to me that it isnt a good thing to have. No Disease is a good thing to have, I didn't sign up to have Diabetes.

Do you ever wonder if you will ever go without a healing insulin pump infusion set hole on your skin, or be without bruises from injections?

Do you ever wonder if someday you can tell someone who was born after they cure diabetes that you use to have diabetes?

Tonight as I was trying to change my insulin pump I was looking at my scarred hips and near crying because I'm so afraid someday I wont be able to find a place to put my infusion set. It took me five painful times of stabbing the side of my butt to find a place that didnt hurt like heck because I hit a blood vessel or vein. I go as shallow as I can with my comfort short sets but not too shallow because then the insulin burns me. Im so sick of insulin burning me as it goes in, it always has and it always will. Sometimes I dont want to eat a large amt of carbs because I know the bolus will burn like hell.

I dont want to even have the worry that someday my tissue will be so scarred up that no where will work for an insulin pump. I cant use my legs, arms or stomach for my pump without being in incredible pain by 12 hours or less. I know I shouldn't worry about things I cannot control but anyone with a chronic disease worries about what lies ahead. I dont worry nonstop but I have my moments.

I just want to be done with the constant management of my Diabetes that no one else understands or cares to understand.

Im so tired of managing my Diabetes.  Some days more than other I just want to give up, but I know I cant. I have an Uncle who has been type one for over 35 years, I believe, and I cant imagine the ride he has taken. 35 years ago no one even checked their blood sugar, the tools were not there. My grandpa died in his 50s from Diabetes and smoking. He died in his 50s, can you imagine that? I miss him horribly and wish I could go back in time give him my humalog, my pump, my dexcom, my glucometer and a million test strips.

I guess when you have something like Diabetes you find out who your true friends are and what family members truly care. I'm on Dexcoms freaking website for God sake and only maybe THREE people in my real life congratulated me. THREE?! Really? Man I thought that was a huge accomplishment, out of how many other people with type one Diabetes are out there, they asked me? They picked me? I try my hardest to help other people with Diabetes and I know they appreciate it but what about my friends and family? Not even a congrats. Im so hurt. Why do people with any other condition get so much more support it seems, what is it about Diabetes? I guess my blinders are on and I dont see it.

I try to stay positive and upbeat about having type one but its just exhausting at times. My mind is never at ease, it can never take a break from counting carbs, worrying about what I ate will do to my blood sugar or wondering if I took too much insulin and will go low later on. Then the guilt I feel if I go too high after eating something, my mind wonders what damage right now is being done to my body because my will power gave up and I ate that carb loaded food. When anyone else with a working pancreas doesn't bat an eye but then they look at you with disgust because you are eating it and you "shouldn't" be. They too shouldn't be eating it then either, they just dont have the extreme guilt I feel because my Dexcom starts screaming at me and because I know my blood sugar is rising. Dexcom guilt is a huge deterrent for me sometimes.

Im trying my best and working hard to manage a disease that no one wants or wants to hear or talk about. Im trying my best to help other people with Diabetes by doing whatever I can to help them get back on track or find a good doctor. I don't want Diabetes, I don't want to take shots, I dont want to count carbs but that is my life. There is no other choice and if you (non diabetics) were faced with the situation you would do the same thing.

I guess there really is no point in this blog just that I know how alone Diabetes can make a person feel. Before the facebook support groups I joined I had no idea that I was not the only person who felt this way sometimes. You whoever you are, are not alone. Diabetes is nonstop management and it wears you out but don't give up, keep working at it and if you aren't getting the support you need find a new endo or cde, join a support group but dont sit alone crying at your kitchen table because you think you are the only one who feels the way you do.  Don't give up and don't half attempt to mange your Diabetes. You cannot ignore it in hopes it will go away. That kind of thinking will put you on a fast track to a whole lot of medical issues. You can do it. You can manage your Diabetes, it just takes a lot of work and support.  Without support it seems to be a much harder task and it is easy to get off track.  I am not perfect by any means and right now I am feeling a bit of Diabetes burnout but talking about it on support groups and helping other people helps me to stay on track.  Helping others helps me to keep the fire burning and my motivation going.  

What do you wonder?  Leave me some comments about your thoughts and I will post them. 

Asante joins up with Tidepool

Astante snap pump partnering with Tidepool!
http://www.diabetesmine.com/2014/01/asante-partners-with-tidepool-on-open-source-diabetes-data-platform.html

So Asante Snap Pump has joined the Tidepool open source information effort, who will join next? Dexcom? Tandem Diabetes Care? Medtronic? Bayer? Freestyle? One Touch?

We need this now, not in 2-4 years! All our data in one place, overlay all the information together, it would make our management of our Diabetes so much easier!

Please hurry.

That moment your Dexcom alarms

It is that moment your Dexcom alarms.  Do you get up right away and test to confirm or just kind of not feel like getting up right away and waiting a few minutes?

I seem to do this more frequently lately. What is my deal? I will just ignore the alarm or silence it. Until I really start to feel like crap. Right now Dexter says 100 but I feel lower. I suppose I should get up and check my b.g.

I just dont want to reach over to my meter. I dont feel like eating any extra calories. This looooooong cold snowy Winter has killed my will power. When I say killed I mean, like beat it up, knocked it out and threw it in the trash. I think I have gained 10 pounds in like two weeks. Yeah thats bad. Im normally very good at managing my weight/diabetes/low blood sugar extra calories. My scale has a dead battery and Im horrified to replace it. I have to lose this weight by my endo appt. I do not want to see that number scream in my face.

Of course it is the Easter candies fault though you know. Who can resist Easter candy? Ahhh I hate the temptation! Im losing the war against Easter candy.

Anyways I suppose that doesnt have anything to do with my laziness to pay attention to my Dexcom. Maybe information overload burnout is getting me too. 

Man I just need warm weather and no more SNOW!

Anyone ingore alarms sometimes?  I know I shouldnt but I still do. Why? What is my deal?

I am a Diabetes Advocate (officially)!

Today, I got the news my application to be a member of the Diabetes Advocates was accepted!  I am incredibly honored to be a part of this community! I am unsure of when I will be listed on the website.

Diabetes Advocates is a program of the Diabetes Hands Foundation, a nonprofit organization that brings together people touched by diabetes for positive change so that nobody living with this condition ever feels alone.

Mission
To connect advocates dedicated to improving the lives of people living with diabetes in order to accelerate and amplify their efforts
Goals 2013-2015
1. Continue growing the reach and impact of the program, by:

• Creating paths for diabetes advocacy for members of the diabetes online community.
• Increasing the number of Diabetes Advocates members focused on type 2 diabetes.
• Increasing the number of Spanish-speaking Diabetes Advocates members.
• Increasing awareness about Diabetes Advocates, starting with an emphasis in the US.

2. Increase the measurable impact of the program through:

• Increasing member engagement in Diabetes Advocates initiatives.
• Expanding benefits that impact sustainability and member development.
• Hosting an annual Diabetes Advocacy Congress.
• Consolidate Diabetes Advocates as a hub for collaboration among diabetes advocates.

Membership Benefits

• Connect with other advocates in a private social network
• Subscription to weekly diabetes advocacy newsletter
• Collaborate in advocacy initiatives with other advocates (such as Spare a Rose, Save a Child)
• Access to free trainings on advocacy topics (such as the interview with Peter Staley)
• Eligibility for scholarships to attend diabetes conferences (see the 2013 scholarship winners)
• Eligibility for micro-grants to support diabetes advocacy projects (see the 2012 micro-grants recipients)
• Inclusion of blog posts in live diabetes advocacy social media feed (follow @D_Advocates on Twitter)

To apply for membership, complete the membership application form. Applicants are evaluated by a Membership Committee, made up of current members of the program.

Ok so I guess I was in the dark about Galileo Analytics and Tidepool! These companies are awesome!

Getting on the Twitter bang wagon was the best decision I have ever made, I think, to keep up with the latest Diabetes research related news.  I learn things on there all the time, it is blowing my mind.

I am sure I am the last one to hear about Galileo Analytics: http://www.galileoanalytics.com/http://www.galileoanalytics.com/

And Tidepool: http://tidepool.org/

These companies are AMAZING!  There is a new-ish article on co-founder Anna McCollister-Slipp @annamcslipp on Forbes.  http://www.forbes.com/sites/danmunro/2014/03/09/the-view-of-digital-health-from-an-engaged-patient/

They are both working on their own versions of software to allow us Diabetics to combine the data from all of our devices into one place, one screen, one graph, it would be a little bit more than AMAZING to say the least!  Now that I know of them I am going to have to keep checking the progress! 

I think someone switched my insulin with water today.

Seriously.  Water.  My blood sugar will not come down below 300 no matter what I do today.  This makes for a fun day when my fuse is cut in half and my head is killing me and Im pretty sure the only thing that kept me from puking today was staying busy, walking around taking pics of cars for the website.  I dont even want to know what my ketone level was today.

I am trying to concentrate on the things people are saying to me but it kind of sounds like the teacher on Charlie Brown.  Whaw whaw whaw whaw, all kind of runs together.  I am trying so hard to concentrate and it just isnt happening.  I hate that. 

I hate high blood sugar.  It makes me feel like crap.  My mouth is dry no matter how much water I drink, my head is killing me and I cannot stop yawning.  I feel like I look like a fool, I cant stop yawning.

Don't you wonder why you have days when your blood sugar just wont come down?  I thought my pump site had not gone bad because I would be at 500 by now if it had, right?  I am wondering if the absorption has decided to go to crap, I was on day two of my site. Came home and changed it. No kinks in the plastic cannula but I do have a nice big bump under my skin and it hurts. This is what I hate about pumping.

For whatever awesome reason my body decided to go all crazy attack mode on my infusion site. So now I have a nice painful lump, it will be gone in a week or so but it doesn't help me feel any better about it. These are the moments my anxiety puts the pedal to the metal and I want to bash my pump into a million pieces with a hammer. Just beat the living crap out of it because it causes me so much pain. Then to top it off my pump site change tonight was terrible. 30 minutes to put another one in. Yep. 30. Why my skin has to be tough as a cow hide is beyond me but trying to shove the awesome 15mm or so needle into my skin isn't fun. It hurts. I do still cry sometimes. I don't have any other choices though. I have to get it in and in somewhere where I don't put it in a blood vessel because then it back flows into the cannula and I can never get the blood to clear back out so I have to rip it off and start over again with a new infusion set. These are the downfalls to pumping, for me. 

Shots are not an option. I cannot manage my crazy insulin sensitivity on shots, half doses on a syringe are too much. Shots give me HUGE bruises. I took one correction shot last night on my side, huge bruise. HUGE. I don't ever bruise for any other reason but insulin injections. No idea why. Its insane. Totally insane. 

And now Dexcom is telling me I'm back up to 300. Are you freaking kidding me?!  I'm done. Stick a fork in me I'm done fighting this freaking battle today! Que the headache and nausea. 

Then I wake up this morning at......drum roll......59!  Good ole Dexter is getting replaced today. It only alarmed when I was below 90. Nada after that! Not good. 

Act NOW: Renew Federal Special Diabetes Program

Please go here to submit your letter to congress.

https://secure3.convio.net/jdrf3/site/Advocacy?cmd=display&page=UserAction&id=396

Act NOW: Renew Federal Special Diabetes Program

Greetings T1D Advocates!
JDRF is getting spring fever here with our Special Diabetes Program (SDP) renewal efforts and we need your help!

The SDP, a federal program that is helping to advance type 1 diabetes research, expires this September and Congress is considering legislation RIGHT NOW that could renew the SDP for multiple years!

Stand with us! Please help by emailing your Members of Congress to let them know how much you care about the SDP and ask them to renew the SDP now.  If the program is not renewed, JDRF and other private funders will not be able to fill the gap and promising clinical trials will end.

Please personalize the letter to your Member(s) of Congress, and then remember to share this alert with friends and family and ask them to take action, too.

Go to the link to send your letter.

My super crazy exciting news! I am on Dexcom's website!!!

Ok so my CRAZY EXCITING NEWS is finally live and I can now tell you all!! I am on Dexcom's Website!! 

http://dexcom.com/heroes/megan

I was approached by Dexcom a few months ago and asked if I would like to be a Dexcom "Hero" on their website.  Of course I was completely shocked and honored to be asked. 

The Dexcom has changed my life and I want to tell every single Diabetic I come across in my daily life.  I talk to a lot of people with Diabetes in my office and I try my best to try to help them out if they act like they are wanting guidance.  I try to help them see there is help and there is hope when some of them seem like they will never get back on track and no one around here is able to help.  I don't try to be their doctor or give them advice on their medical treatment plan, but I try to get them in gear to talk to the right people to help them and let them know they can get back on track.  We all fall off the Diabetes wagon at times, its relentless condition that you cant take a vacation from.

I have pointed numerous people to my Educator Calli and my Endo Dr. Iverson.  These two people have changed my life and I owe them so much that I cant even put it into words.

Calli is my life saver and gets me back on track when I need her to. She is my friend whom I trust with my life and I do not know how I made it without her help.  Countless people I talk to do not know we have such a wonderful Diabetes Educator in a nearby city.  Calli and her co-worker Teresa are such a great source of information and current technology. 

Dr. Iverson is an amazing Endo, he stays on top of the newest tech and helps get his patients on pumps and CGM's instead of being afraid of them like many Endo's still are.  He CALLS me himself and this in itself is amazing.  Doctors do not call patients anymore, period. This guys does.  He is not afraid of one brand or another nor does he push one brand over another.  Or at least in my case.

I am honored to be on the Dexcom Heroes page and I still cannot believe I was even asked!

Dexcom is my flashlight in the long dark tunnel of Type 1 Diabetes.


(As part of the agreement to be on Dexcom's website I did receive one complimentary box of sensors, I am not paid to give my opinions about Dexcom, just sharing my story and they gave me four sensors)