Saturday, July 7, 2012

9 Years and a Day of Type 1 Diabetes

I have had type 1 diabetes for 9 years today. I was diagnosed with the onset of type 1 diabetes July 7, 2003. I was life flighted to UCDAVIS and spent an entire week in the hospital and 2 days in pediatric intensive care unit or the ICU. I was 13 years old and close to a coma. 9 years later and I have realized that type 1 diabetes, is, and always will be a part of who I am.  

 I will check my blood sugar whenever I need to and where ever I am. I am not shy or secretive about my type 1 diabetes. It is an auto immune disease. The doctors told me that it was not anything that I did to cause it. They also said, that I could still have a normal life even with type 1 diabetes. They were right that it was not my fault, however I am not sure if I have a normal life. I have had so far a successful life. With of course, its challenges, from type 1 diabetes. I have had a seizure, Diabetic ketoacidosis a few times, all of diabetic supplies had been stolen in a move, bad sites, no insurance, and the list goes on. I have also had some amazing things happen, like meeting the congressman, helping others t1’s, and meeting other type 1 diabetics. Meeting those other type 1 diabetics changed my life for the better and brought back a new normal into my life. My friends have always supported me through my diabetes by learning and understanding what it is and what to do if anything goes wrong. Not to mention they are pretty tough around blood.

I am a type 1 diabetic, however that does not only define who I am.  I am also a Christian,  a pastry chef,  a business woman, entrepreneur, a 22 year old, a friend, daughter, niece, cousin,  a student, a Princess, a dreamer, tennis player, swimmer, golfer, a nanny, babysitter, and not one completely defines me.

I am me. I am who I am. I wear what I think is cute, not what may be in style at the time. My favorite color is purple. I love sparkles. I love to decorate cakes. I love to be creative. I love to dress up and wear tiaras. Type 1 diabetes is a part of me just as my bad eye vision, hypothyroid, ADD, random fevers, and bad hearing is a part of me, but I work with it and I become stronger through my weaknesses.

 Since I have had type 1 diabetes I have never let it get me. I graduated middle school, high school, and Abilene Christian University with a GPA above 3.25. I have had and continue to have a great relationship with God. I got my driver’s license. I learned how to decorate cakes and work in bakeries. I have created my own small business Sun Ray Sweets which I hope will be friendly towards people who have to be gluten free. I have lived in the dorms. I have met a congressman and encouraged research for a cure for type 1 diabetes. I have Studied Abroad; I went to Austria, Germany, Italy, England and France. I have traveled around the states and the world.  I went to Summit Leadership which is a January short course in Colorado.  I have kept myself pure and never kissed a guy. I have learned new skills. I was on the high school tennis, track, golf, and swim team. I have also made it through growing up with all the hormones that cause crazy and scary blood sugars. I have done fundraisers for type 1 diabetes, Best Buddies, study abroad, and now Warren Retrivers. I have puts on a Happily Ever After Benefit Fashion Show which helped me and other type 1 diabetics work towards raising money for their service dog and mine.
Now I am working towards going to a culinary school in Northern California and I am working on raising money for a diabetic alert service dog, through Warren Retrivers- Guardian Angel Service Dogs. I figure if I can do all that with type 1 diabetes, imagine the possibilities of what I can do with a warren retriever service dog by my side. It has been a long journey that has only just begun.  

 You can also follow my story about my fundraising for my diabetic alert service dog @

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Sunday, October 30, 2011

What is normal?

Next weekend I am very excited about a reunion of my t1 people, a support group that was started by the ACU social department, my freshmen year in college. We are celebrating November because it National Diabetes Awareness month! We are going to go bowling and meet some new families that live in and around Abilene. I am so excited to be in that kind of normal. When I say normal I mean that I get to be around other type 1 diabetics. When a person looks at a plate of food they see a plate of food, however when a type 1 diabetic sees a plate of food, they think about blood sugar what type of food it is, how many carbs, how much fat is in it and what it will do to you later. Most people do not think about changing sites and having something connected to you 24/7 or making sure you have fruit snacks or caprisun incase you go low. People do not think about why they feel shaky or sleepy. We understand why we are scared to go to sleep. These are things that Types 1 diabetic’s all have to think about. When we have a group of type 1 diabetics that are all together it’s different. We think about the same thing, we understand each other. The pains, fears, responsibility, being terrified, and so unsure while still having the courage and love to keep going and be that child, college student, or whatever person that type 1 diabetic is. We want to have that sense of normalcy and with those other t1 families I get to feel normal, no diabetes does not go away, but I am not alone I feel loved and understood. I do not have to count the carbs by myself, others remind me to do insulin, and check blood sugars. It is a different world that I get to live in for 2 minutes to a day. Those positive emotions that I am around broaden and build and bring a positive spiral of hope, love, and faith that show me I am not alone and I can be myself.

Sunday, October 23, 2011

Media Issues

I get angry at the diabetic TV commercials; I want to flip off the tv set. The reason I get so angry is because they do not differentiate the 2 types of diabetes. What the media has already misinformed to the public has caused hurt and judgment on me, innocent children, and the parents of those children. Saying I have caused my life threatening, auto immune, chronic disease that it was my fault. That I ate too much sugar when I was little, saying I never exercised, saying I did not eat healthy, and saying that it’s all my fault. The looks I get in public while I am checking my blood sugar or even when I say I want to be a pastry chef. The looks other type one diabetic children get and their parents as other people look in disgust. We all know that we cannot be angry at people who have been misinformed, because it is not their fault, it is the media who do not say type 1 or type 2, they have been brain washed into believing there is only one type. That with type 1 it is my own immune system that destroyed my beta cells, that work in my pancreases to create insulin and without insulin DKA, coma, then death however what most of the pubic also does not realize is that we need insulin which is our life support however if we do not count carbs, calculate ratios, basal rates, check our blood sugars, know our bodies, and if we are not careful, even if we are and end up with too much insulin blood sugars would go low and then crash with a seizure. The worst is at night so many parents set there alarm clocks 12,2,4,6 am to check there children's blood sugar and even then they may not catch it in time. Dead in Bed Syndrome a terrible name also the most common death for type 1 diabetics. That is when you are sleeping and have a bunch of mini seizures and die and you do not wake up even being super careful it could happen to any type 1 diabetic. Type 1 diabetes is very different than type 2. My anger comes from my fears of people not understanding the seriousness of this disease, I am hurt by the looks I am given and so many others are, I become scared when mis-educated people tell type 1 diabetic children that they can grow out of this disease that if they eat health and get exercise, and lose weight that it will cure them. I become angry because I still see those commercials and knowing that if I did not know this disease I would be sucked into the same pattern of all those other misinformed people. I do have to say I continually feel loved when I see the people who love and care about me. Who learn, take time to understand, and support me though my type 1 diabetes. I know I am truly blessed with those people who care to learn and know the truth about type 1 diabetes.

Thursday, April 14, 2011

I am a good girl.....and I do my best but it's not easy...

I am a good girl, I do my best in school, I work hard. I do not do drugs, I am saving my first kiss for the right guy, no sex, no drinking, no, no, no anything bad. I follow the rules, I do not lie. I have gone through a lot of junk in my life and continue to be the best I can be while still fighting though all the junk that I deal with daily.
I have type 1 diabetes and I have my bad days and good days and icky days and whatever else days. I will fight with all my physical stuff the highs and the lows and the fevers, the fevers are new and have no idea what is wrong, but I deal with it. I deal with the pain and the mood swings and whatever else comes my way. I have God to help me through it I have an amazing family and loving friends and a amazing support group.
What I do have major issues dealing with is government insurance that does almost nothing and doctors who know squat about my disease and programs that denied me for no reason, and other programs who deal with the doctors who do nothing and do not refill my insulin and do not tell me about it. That is stuff I cannot handle. I cannot handle it when my somewhat awful government insurance will not pay for a glucagon incase I have a seizure or will not even write a script for lantus in case my pump decides to break because they are WHAT IF and they do not do WHAT IF. This is the stuff I do not do well with. And yeah they will NOT pay for ANY of my pump supplies. I cannot get on Medicaid because I do not have a baby. I do not do well with this stuff.
I deal with a lot of stuff most of it I do not talk about. I don’t want to I do not want to think about it. I just try to push the pain away, I hide it, bury it try not to think about it I focus on the different feeling of highs and lows. Most of the time I feel like I am pretty good at not letting people know how much pain I deal with not all of it is type 1 related, some but not all. I try to be happy around others but it does not always work, they see my pain.
I want to travel the world and my dream is coming true. This summer I get to study abroad for a month in the summer and go to Germany. I think it is something God wants me to do but money the issue of money I can barely get day to day gas, food, bills. So saving up is so difficult. I have been praying for a miracle that I will not have to think about money because it will be provided even if that means for the summer. I would be so thankful. I have been praying for a miracle that I will not have to worry about money, insurance, I pray I will have a great doctor to deal with my t1 and that I can help others who are having issues with t1 supplies that all the amazing t1’s who have helped me I will be able to help them and others. I pray that I will not have to think about medication, insulin, strips, insets, or any of it. And I am not even talking about a cure just away that all the medication and t1 supplies will be provided for me. I feel like I can deal with college, hormones, boys, peer pressure, most drama, and even type 1 diabetes and the random fevers, however insurance and being totally broke is something I have issues with and pretty much break down crying every time.
My heart breaks this week because 3 type 1 diabetics have died from this disease and it scares me so much because all of these t1’s were so close to my age. It could have been me. It pains me to hear that a 7 year old t1 had an accident because of a high and the teacher made her tell the entire class what happened before she could go to the nurse’s office. It hurts to know that another teacher did not want a child to check at the lunch table so she made her check on stage in front of everyone. I am not shy about my t1 but that would totally embarrass me and be humiliating.
My world feels like it has been shaken and hurt and as I try to put back the pieces I am waiting for a miracle if it is a cure great if it something else beautiful. I am a good girl and I want to do my best and help others and be an amazing culinary artist. I am a good girl I do my best to bring glory to God and his light shines through me. He will provide. I know I am blessed and even though I deal with craziness I have some amazing people in my life. Thank you to all who read my blog and support me I know some times I am random, however I hope this helps you in some way if it knowing you are not alone or in another way. You are AMAZING and never forget that.

Monday, April 4, 2011

One day

This has just been my thoughts I did not try to talk about one certain thing it was a few weeks ago I had a bad day and have just added to it on Hope and faith and it started out as a vent. I would not be able to be where I am today without any of you. I am so blessed. I plan on doing a blog on basal testing hopefully in the near future however I am not sure when.

I believe there will be a cure one day, however I catch myself wishing for one day of no diabetes just one day a year is all I ask, just one because some days I just want to pretend it does not exist, I want it nowhere near me. I want to be semi-normal. (Let’s face it, I will never be completely normal and I like that I am not normal) Some days I just want a break. I want to eat without checking, counting carbs, insulin all of it that involves t1. I just want normal. I would like to eat without thinking about the carbs and if that fat or fiber will affect me later. One free day of not being hooked up or have to carry around the meter or Capri suns. Just normal. I would like to not have to think about, will this affect my numbers always counting and recounting thinking why did this do that. I want to not have to have the terrible feeling of highs or lows and just be able to feel good. I would like to be able to say I am sleepy because I am, not because I am high. I would like to not be able to see the millions of holes in my fingers and scars from my sites. I want the tubing to not be there and think am I going to hook on that or that. Sometimes I just wish I could have a day off. Sadly I know it will not happen until there is a cure for t1. Then I think instead of wishing for one day I would always be off and I would not have to poke or count or anything that involved t1 I would be completely free. That has not happened yet however it will. Some days I wish for just one day off that’s it, one day of freedom. I am blessed that I am able to live a semi-normal life if I do not want people to know I have t1 I am capable of hiding and I can hide it well, however I really do not care if people know I have it, but I am constantly thinking about how I feel, did I remember this or that, why did my mood just change, and the list goes on. I think at the same time if I did not have t1, I would not have some really special people in my life or be able to have learned some of the many valuable things in my life, or know so much about eating healthy, or how my body works. Some days t1 is the worst thing in the world how dare my pancreas and auto immune system not work together and fight till the death. How dare my body reject me to the point of DKA or seizures, how dare it do that. I fight everyday with t1 and work hard at making it work with me and sometimes it just does not work with me and I ends up in pain, but I think…. Type 1 diabetes is not all bad, because I do not hate it, I get frustrated with it, however it is what it is and I have found that it is a part of me it has changed how I think of things and see things it has made me stronger than I ever thought I could be. I do believe it should at least have time limit in my mind 10 years then it magically goes away and my immune system will again work with my pancreas. I pray that at my 10 year mark of t1 I will be healed and my immune system will again to continue to work with my pancreas if that means a cure I would be thrilled if that just means hope for me to look forward to a point in the future that I will have that one day that turns into everyday then I will continue to pray for one day of normal. One day I will be free, one day I will be normalish, one day….we will find a cure for type 1 diabetes

Wednesday, March 30, 2011

March TYPE 1 Diabetes Madness

This month has been miserable in t1 terms. I had 4 insets in 3 days, pump had issues, shots, bruises, even my finger pricks hurts, not to mention DKA, many bad sites, broken pump clip, and a few too many lows and highs which included ketones. It was a bit too much for me to handle all in one month. I have been ready for March to be over sadly since it started. And that does not even include all the physical issues unrelated to t1 like a wonderful stomach virus and loss of appetite which I never thought I would have an issue with. I never thought my world would be like it is today.
As much as I felt like my world was slowing going dark and I was all alone with this disease that would not give me a break I was reminded by my t1 family all around the world that I would never be alone not only because of them but because of God. He would put that specific person in my way that day of just loving me, listening to me, encouraging me to keep moving forward that I am not alone and I will never have to deal with this disease alone.
This month has been melt down city trying to be so strong and go to classes and after being in DKA having everyone one ask how you are doing and not wanting to lie, but at the same time being too exhausted to explain that DKA is when you feel like your body is being torn apart bit by bit and yes today I do feel better but nowhere near normal and it takes some time for it to heal. I do not lie so I say yes I feel better not great but better than I did.
Yeah this month was pretty awful however I was so blessed at the same time. Good thing I did not die from DKA or go into a coma. I was able to get it back under control eventually. I knew what was going on. I have Professors who support me and understand that sometimes I do not have control and have realized that they are truly willing to work with me when I am fighting my t1. I have friends who will put me a site in my arm when I am not capable of doing it. I have friends who know what a good bg is and know when something is not right to tell me to check my bg when my attitude is off. They are there for me when I just need someone to sit with make me smile or ask if I need anything and continue checking up on me and making sure my bg is good and that I am good.
I have t1 people who are truly amazing and are just there and all you say is a number and they know exactly what is going on and what to do. They remind me that I am not alone and it is not just me and they are praying for me and love me. They go in my world of darkness with flashlights and find me. They help me up and remind me that I am strong and can do anything thing. And they turn on the light which brings my world back to life and hope. My t1 people are amazing they help me with my supplies and always have perfect timing every time. I now do not have to worry about going low on supplies for a few months now because I have such amazing people and they are more than just people they are my family they are my t1 family.
Sure it was a difficult month however without my relationship with God, my t1 family, my family, and my friends is that I would not be where I am today. Every day they put up with me, they love me, they support me, and they are always there for me. I would be nothing without any of them. March did have some positives because there is always light in the darkest of places. It reminded me truly how blessed I am and if it was not for this terrible disease I would never have met any of these truly amazing people. I have had t1 for almost 8 years, 4 of those years I felt alone, now I feel truly loved and never alone. I will never be alone again though this disease. I pray that I will or possibly have changed someone through type 1 diabetes in some way. I love you all and I am so thankful that I have each and every one of you in my life in some way. This is the song that would alway puts a smile on my face and just makes me happy and feel so blessed please listen to it. It is Francesca Battistellia- This is the Stuff
Lots of Love,
Sarah Ray

Wednesday, March 2, 2011

Looking at what was

This was the first paper I wrote after being diagnosed with type 1 diabetes the assignment was to write about what you did over your summer vacation and this was mine. What I did over summer vacation was that I was diagnosed with the onset of type 1 diabetes. Reading over it I have realized how I see things so differently now and at the same time I still see things the same. I still remember the events of that day. Did you know that my tennis coach thought I was high on drugs!!!! I was straight A student! The thing I remember the most is that I was so afraid because I did not know what was wrong with me and that when they told me I was type 1 diabetic and finally understood it all. I finally knew what was wrong with me. I was not afraid of dying because I was able to label the pain and confusion that I had been struggling with for so long.
The Memory That Changed My Life Forever
At the end of the 7th grade I was always tired, my stomach hurt, my feet hurt. I lost my appetite, was always thirsty, and I was walking into walls. Back then I thought that becoming a teenager was going to be tough however I had no idea what was coming my way. I did not have any energy.
My mom and I have always gone to the craft fair at the Lake of the Pines on the 4th of July, every year since I was born. Two years ago for the 4th of July I couldn’t get any farther than the sofa. I really wanted to go. I didn’t understand why I couldn’t get up?? With tons of effort I did however make it to the fireworks. People thought I was sleeping during the fireworks but, I wasn’t. We decided to go to the doctor first thing on Monday morning July 7th. Even though we had gone to the doctor the week before and he thought it was a virus. Everybody said I had Mononucleosis?
Monday we were able to get a doctors appointment in the morning. Dr. Smith tested me for Strep throat, was it? So not! Then after another test he came in and said, “Your ketones are way high. The doctor said go straight to Auburn Faith Hospital.” He started making phone calls.
When we got there they shoved an IV in my arm. After an ambulance showed up and took me away. All I really wanted to do is sleep, I was so close to going into a coma. It seemed like we drove for hours but later I found out it was only five minutes. They were so nice to me, as they put me in the helicopter, I remember them saying, “she won’t remember this.” Well, I do! I was half asleep on the flight to UCD Medical Center. I was taken straight to PICU; I do however remember the horrible taste in my mouth and the nasty smell from the oxygen. I stayed there for two nights and two days without food or water, plus they put another IV in my neck when they did this they got tape stuck in my hair. I had a MRI when I first arrived at the hospital they did this so we would know for sure that my brain hadn’t swelled up or anything and one more before I went home five days later. I had at least five EKGs. The bed was so uncomfortable, I kept slipping out the bottom. On the third day I was moved into a room with a roommate. I had two different girls that I shared the room with me at different times. The first was a 7 year old she was getting an ear. She totally inspired me. The second girl was a 15 years old had brain surgery again I was totally inspired. After that I thought that diabetes wasn’t that bad. After all I didn’t have to be cut open.
The food at the hospital was really bad that they had given to me but, the food that my Mom got from the cafeteria was really good. I ended up eating her food and she ate mine.
The last two days we learned tons of stuff about Diabetes like why I am a diabetic, and how there was nothing that I or my Mother did to cause me to have diabetes. I learned how to count carbohydrates, what to eat and when. All of the ways on how to do glucose testing and giving me my shots. I learned about Type 1 and 2, diabetes. Type 1 is mostly in children, it is when the body does not produce the hormone that tells the pancreas to make insulin. It is a balance of insulin and carbohydrates. This is treated only with insulin and can not be fixed with diet or medication. Type 2 is in adults and is a misuse of insulin and can be treated with medication and with the proper diet and exercise. However they also need insulin sometimes. I learned how to mix and draw insulin and give the shots. My Mom and I both had to learn how to give me shots before they would let me leave. I am now a pro at giving shots and stuff. At the end I have learned never to abuse the privilege of eating foods correctly or taking advantage of the good things in life. I am not sick, I do not have an illness. I am a healthy girl who has type 1 diabetes.
Yes my world changed. Some days I wish it never would have and others I wonder if I would be who I am now today, however I do believe there should be a time limit on type 1 diabetes like 10 years. The best thing would be a cure, however over some time I thought 10 years was better than a lifetime of type 1diabetes. My world changed in the summer of 2003.