It has been too long!

 It has been too long since my last post. I have been a busy momma running around with the kids. I thought this would be the easiest way to update everyone…

I know all my amazing FB friends see me tirelessly asking for money, or support in some kind of way with JDRF. I am always posting a link of some kind with the newest updates on research and where all the money is going. I feel the need to share with you what I see happening on a far too regular basis in our community. And when I say "community" I don't just mean Prosper, or Dallas or even Texas. I mean to our children and adults no matter where they are. 

I have been very involved with JDRF for a while now. If you know nothing about this organization you should check out dallas.jdrf.org. That office has been my second home for the past year and I am truly grateful to the SMALL office of amazing women who work so hard to help find a cure. They have opened their arms to me and I am truly grateful. JDRF is the top funder of Type 1 research! They give 82 cents per dollar straight to research. With this organization you know where you money is going. That is one of the reasons I volunteer for them. I know when I am asking someone to donate that their money is going where it should. 

This past year I have been truly heartbroken to see the amount of children being diagnosed in the school district that my kids attend and also in the neighboring school districts the same thing is occurring. There have been 3 children in the past 3 months that I know of. Three families who lives have changed over night. Three sets of parents scared to death to send their kids to school next month for the fear of the unknown. 

Children's Hospital in Dallas has this great program called D101. It is an educational class for the children and families of newly Type 1's. It is every Wednesday, and every Wednesday it has a room full of newly diagnosed families. The classes are getting bigger, so big that Plano Children's is now accepting type 1 patients and starting their own D101 class. August 5th is the first D101 at Plano and their plan was to only have one a month, they already had to grow to 2 classes a month and they will soon be to every week just like Dallas. Stop for a minute and think about that. The Dallas area is getting so many families that they are having to expand to serve all the number of diagnosis.

My heart truly breaks for these families, but it also motivates me to keep asking for help. It inspires me to keep educating anyone around me whenever I get the chance. You might not have a family member with Type 1 diabetes but you should still educate yourself on what these children and families go through every single minute of every single day. Insulin is something your body produces that you most likely take advantage of, you never think about your insulin producing cells and how they work for you 24/7. Every time you eat, sleep, exercise, take a big test, go to the beach, etc your pancreas knows exactly what to do and does it perfectly every single time. What if you woke up tomorrow and it suddenly stopped? What if you had to check your blood sugar 10 times a day? Take multiple shots? Wear a pump? Wear a continuous glucose monitor? All of that just to stay alive? What if the insulin you were injecting in your body was the only medicine that can kill you if you take too much or too little and you have to make that decision multiple times a day everyday for the rest of your life? That is what myself and many other families face daily. This is why I raise money and volunteer and do everything I can to help this cause. The research is amazing! The research is so close to really changing lives. So please help. You can help with time, money or just a prayer for these families. You can help by educating yourself so when you see a little girl with a pump, checking her blood sugar on a bench at the playground you know! You know a little bit about what she goes through. Give them mom a hug and tell her how awesome she is, because so many people don't tell her, they just judge and stare. 

https://secure3.convio.net/jdrf3/site/SPageServer?pagename=walk_participant_center&pc2_page=center&fr_id=3884

JDRF

JDRF stands for Juvenile Diabetes Research Foundation. It is a charity very near and dear to my heart. September 28th I will be participating in the Walk for a Cure. I am also organizing a Kids Walk for a Cure at Madison's school in April. Her school will be one of 5 schools in Prosper ISD participating. Anyone who wants to bring this great educational walk to their school please let me know!! I would be happy to help in any way possible!!!

JDRF is not only important to me because I am type 1 but because of all the children and teenagers out there who feel alone or "different." Kids who are type 1 often deal with depression and bullying due to the lack of education. I am on a mission with JDRF to help education everyone out there about type 1 diabetes and how it affects entire families. There are so many aspects to this disease that people may not understand. It is so very important to help donate to research to find a cure and better treatments for people living with type 1. You never know who will be diagnosed around you. It could be your child, niece, nephew, grandchild or your child's best friend. Any donation you make goes directly to JDRF. Every donation counts no matter how big or small. Please feel free to ask me anything questions you may have about type 1. No question is a stupid one. I love to help people understand what these kids are going through on a daily basis. Below is a link to the page where you can donate. You simply type my name is under the walker section. Or just go to www.JDRF.org and go to the Get Involved tab and click on walk for a cure and enter my name there.

http://www2.jdrf.org/site/PageServer?pagename=walk_homepage

JDRF Walk for a Cure

First of all I want to start off by saying that my prayers are with everyone in Boston. My sister lives outside the city. I can only imagine the heartbreak and outreaching of a city coming together in tragedy. When these senseless things happen it is even more important for us to truly live our lives to the fullest. To always be a light in the dark, and to help when a hand is needed. I recently posted about passion. Once again we are reminded how important it is to be passionate about something and compassionate to those around us. JDRF is the cause closest to my heart. Reaching out to other T1D and helping raise money for a cure is what I want to do. Tuesday is my first support group meeting! I am very excited to meet a group of other T1D and see what their passion is! I also received support from my daughters principal to start working on a JDRF Walk for a Cure at her school next year!!! My husband and I are also going to be working on putting together a soccer tournament to support the cause. I want to make a difference. I want T1D kids to know how awesomely amazing they are! I want them to know there are people out there who truly care and want to find a cure. I want to bring awareness to this cause. There is so much misinformation out there that can make being a kid with diabetes hard. Let's all come together and do something good!! Small things turn into big things very quickly!

Passion

Passion is an important thing to have. It is what gets us up in the morning and what helps us through the rough times. I have always been passionate about my friends and family...... especially my kids. I have devoted the last 7 years to being a stay at home mom and making sure my family was happy and healthy and growing. It is my passion. Last night my best friend and her main man were over for dinner. We were having a pretty deep discussion when he asked me what am I passionate about. I blurted out that I am passionate about my Type 1 and helping educate those who are newly diagnosed. In this discussion I also realized I do not myself have a group of people who have type 1. People I can meet face to face and have lunch with and share up and downs with. I am now pondering how many other people in my area feel the same way. My dear friends have inspired me to start a support group in my area. In starting this support group my hope is to gather a group of people who can join to support each other in this roller coaster. Also to start a mentor program where we can reach out and help young kids around the area being newly diagnosed, and their parents struggling with the life changing news that they just received.

Everyone has something that they are being "called" to do. Go out and do it. So anyone out there who knows any type 1's in the Mckinney, Texas or the surrounding area please send them my way!

I'm in love with Dexcom

I am back to blogging! I took a few months off and realized the other day how much I miss this thing:)

My 13th anniversary of T1 is coming up and with that I would love to be able to say, "Wow, have I come a long way." Sadly this "disease" has a way of going through multiple cycles and one of those being diabetes burnout. Any other diabetics out there know exactly what I am talking about. We get burned out and overwhelmed with the day in and day out of the roller coaster that is diabetes. After 13 years I can still get shocked when my meter reads 400 or even 30. Luckily there is some amazing technology and Endocrinologist out there that have lit a fire back under me and have motivated me to turn things around quickly and easily.

Which leads me to talk about my love for Dexcom. For those of you who do not know about this technology google it. Even if you are not type 1 you should really see how this works its amazing. A few years ago my old endo wanted me to go on the Minimed CGM (continuous glucose monitor). I had a very short lived relationship with this device TWICE. We broke up, it was ugly. Minimed is a fantastic company. I love their pump, it is what I use now and will probably forever. Their customer service is wonderful and quick. I just was not sold on their CGM. So when I went into my doctor's office last week to get set up on their Dexcom CGM for a week I was a little hesitant. Immediately I knew this was different. It was hesitant but it was love. I left the doctor's office and two hours later I was in business. There were so many times that week it literally saved me from multiple low blood sugars that would have turned really dangerous really fast. It was so accurate the entire time, that I was giddy about checking my blood sugar to see that my Dexcom was right on every time. It gave me back confidence that I had lost from so many years of this "disease." It turned my blood sugars around drastically and really helped me see where I need to focus. It has made my life easier and has allowed me to start doing things again that I was hesitant to do before. My new very own Dexcom will be here on Thursday!!!! I have felt lost for the past day without it. Any Type 1's out there or anyone who knows a type 1 talk to me if you need to be convinced! I'm in love and I hope I don't have to throw this one out the window:)

I also need to give a shout out to my Endocrinologist who truly believes in me and even though she is not type 1 she truly tries to understand what I am going through. She encourages and does not judge and she is the first endo that I do not try to think of every excuse in the world to cancel my appointment.

An Unlikely Christmas Miracle

I believe that miracles come in many different forms. They aren't always as "miraculous" as one might think. They can be the little things in life that most people do not even notice, or the big ones that truly change people's lives forever. For example, a father who is going to have knee surgery finds out he has two arteries blocked and may need bypass. To his children that is a miracle! When I was diagnosed with a very very rare blood disorder it was not "luck," it was not the doctor's. It was a true miracle that I survived and am sitting here typing right now. That diagnosis changed my life forever. It was not just a short lived miracle that I soon forgot about after remission. It is with me every single day. Everyday since then that I have been happy and healthy has been a "miracle." My hematologist who has been in his field for many many years only has one other patient who has every had my same blood disorder. I have learned to truly appreciate everyday that I am healthy and realize this is not a guaranteed future. So when I received a phone call today from my transplant coordinator saying that even though all of my test have come back in the range they want them in I might not be the best candidate for the islet transplant I had two choices. 1)get really really upset, sad and get my self pity on (which trust me was very tempting) 2) look at my amazing children who are happy and healthy, my husband who has been a miracle in my life everyday and myself who has overcome so much and I am still standing. I chose option 2. I have a choice. And I could sit here all day and ramble on about the amazing things and people in my life! I am a survivor!! I want to inspire people through my life! This blog is not over because my journey does not end because the islet trial ended. It has only begun. I have learned how important organ donation and blood and plasma donation is and I want to inspire with my stories! My life has been many many miracles big and small.

The Waiting....

This clinical trial process has absolutely been about "hurry up and wait." That has been the theme of my life for the past 6 months. I am currently in the "wait" zone again. The research team decided to run a test on me that usually is not done until I am in the hospital bed waiting for the transplant. The last two patient's transplants have failed. My heart breaks for them. They both rejected quickly. In those failures they made progress. The doctors learned that they need to run certain labs before patients are listed. These tests that I had done can possibly give them an even closer look into how I might respond to a transplant. Progress being made over the last few months is amazing! They are still learning so much with every new patient that comes through their office. It has been two weeks! I am hoping to hear some news soon. I am really learning patience. I am learning that I care about people I know nothing about. I am learning that I truly want success for other people even if it is a failure for me. If these tests show them that I should or should not continue with this, then that is called progress. The two patients that recently rejected, it was not in vain. It was not a waste of islet cells. It was progress.