At many times diabetes can feel like a very isolating disease. From the moment of my diagnosis I have felt like diabetes was my disease and mine alone. Sure my family had to learn all about it and how to manage but in my 7 year old mind THEY didn't have it. It was MY body not theirs who revolted. How could it be their disease too?
Oh how wrong was I! The entire concept of Type 3's has completely changed my way of thinking. The DOC gave me a title to all those people who are affected by my diabetes. I can turn to my Mom or to Steve and see that they GET IT. Sure, they don't know what it feels like to have non-stop low's or highs, or those roller coaster days that leave you totally wiped out. That's what I have you, the DOC, for. But for the most part they get it. When somebody makes some stupid comment about diabetes Steve shoots me a look that says "they are not one of us, they don't understand."
Not only has the DOC opened my eyes to just how well Steve and my mom get it the DOC has also made me feel like I'm not alone. I no longer feel so isolated. Sure in my offline life I am not constantly running into other T1's and if I do we don't spend the time chatting about the big D. I get online to find comfort that I can't find elsewhere.
At the Taking Control of Your Diabetes Conference this past Saturday I had the pleasure of meeting two members of the DOC: Ninja George from Ninjabetic and Jaime (@JaimieH). We didn't get to meet up until the very end of the conference but we were able to sit and chat for a little while. Let me just say that they are both such warm welcoming people. I really wish I had had more time to sit and talk with them. Neither of them realized it but our short seemingly unimportant conversation was the finally little push I needed to not only blog more but to make some blog changes I hope to make soon. (Details on that to come!). The entire day of the TCOYD conference was nudging me but talking to them was the finally little push I needed. So thank you guys. Both of you are total Ninja's Kickin D Booty! (Yes, I will do a recap/thoughts post on the conference soon.)
I'm a fairly new member of the DOC. Less than a year. In that time though my A1c plummeted from 10.2 to 7.2 (and still working to get it in the 6's. The psychological toll diabetes was taking on me is so much easier to deal with then it was before. Most importantly I no longer feel alone. I wish I could go back 22 years and tell 7 year old me that I am not alone.
Thank you DOC, from the bottom of my heart.
Showing posts with label family support. Show all posts
Showing posts with label family support. Show all posts
Thursday, November 4, 2010
Wednesday, May 12, 2010
My #1 Supporter
Today is Day 3 for Diabetes Blog Week. The topic for today is to write about our number 1 supporter. I'm really lucky that I have 2 people who are tied for number one supporter: my mom and Steve. I've written about what an incredible support my boyfriend, Steve is and how much I rely on him. The person who before Steve was always my number one supporter and continues to be my rock is my mom. In honor of Mother's Day here is a letter to my mom.
Dear Mom,
I can't think about diabetes and not think about you. I hate that you are associated with this disease like that but since the day of my diagnosis anything diabetes related you were there. What I remember most about the day I was diagnosed was not the first fingerstick to test my blood sugar or my first injection. What I remember is you. We were sitting in Dr. B's office and as he was talking I saw you tense up. I then remember being in the elevator going up to Dr. H's office and I could see in your eyes and in your mannerism that something was wrong and it had to do with me. Of course, it would be years until I had somewhat of an understanding of what you must of been feeling in that elevator ride. Of course, I'll never understand fully but I'm just now getting it. Those first few days I don't know how you did it. My baby brother was only 5 months old and you had to leave him home to be with me in the hospital. The strength that you showed me in those early days have stayed with me.
When did you start sleeping through the night again? Between a newborn and a 7 year old with diabetes you were up a lot during the night. All those nights when I would stick my finger out from underneath the covers so you could test me. How did you do it? Having a CGM back then would have been so much better and easier.
I was a difficult child. Stubborn as a bull. Wonder where I get that from? Unfortunately for you (and me) I was stubborn about being "normal" and pretending I didn't have diabetes. Those fights. Dear god, those fights we had about me not testing and not taking proper care of myself. You still loved me and was always right there if I ever needed you. When you and Dr. H decided that it was in my best interest to go on an insulin pump as an eleven year old I was not happy but you guys were doing what was in my best interest. I wish I could tell eleven year old me that going on the pump would change my life forever and be something I would feel lost without. In your motherly wisdom you know this, didn't you? You knew that it would be good for me.
We all have had our own way of handling my diagnosis of diabetes. Yours was to do whatever you could to get involved in JDRF; first in the local chapter then with research. You spent so much time traveling the world over reviewing grants and meeting the world's experts in diabetes. After every trip you would come home so excited about the research being done you could talk for hours about it and you did! At the time all that scientific stuff was so boring to me but I sat there listening and encouraging you. This was your outlet. This was your way of dealing.
I've now come to realize that while you were out there doing this for me you were also a champion to all the other people with diabetes. The hours you still spend reading grants and still traveling (although not as much as before, thank god) shows your amazing dedication.
A long time ago we made a promise to each other: you promised to work as hard as you could to find a cure and I promised to take good care of myself so that I would be healthy enough for that cure when it was found. You have not swayed from your promise and I have. I am working so hard now to keep my control tight. When I get frustrated and annoyed I think about you. I think about all that you have sacrificed so that I could have the best care possible and all the tools necessary at my disposal. I think about the strength you showed not only in those early days but in all the days since (7,862 days!) I think about the sleepless nights you were up worrying about me. I think about the hours you spent on airplanes traveling around the world reviewing different labs. I think about the phone call you received in Hong Kong from me crying into the phone saying I was in the hospital in DKA. I think about you and the love you have for me.
See, I can't think about diabetes and not think about you.
I love you, Mom, more than I could ever express.
Dear Mom,
I can't think about diabetes and not think about you. I hate that you are associated with this disease like that but since the day of my diagnosis anything diabetes related you were there. What I remember most about the day I was diagnosed was not the first fingerstick to test my blood sugar or my first injection. What I remember is you. We were sitting in Dr. B's office and as he was talking I saw you tense up. I then remember being in the elevator going up to Dr. H's office and I could see in your eyes and in your mannerism that something was wrong and it had to do with me. Of course, it would be years until I had somewhat of an understanding of what you must of been feeling in that elevator ride. Of course, I'll never understand fully but I'm just now getting it. Those first few days I don't know how you did it. My baby brother was only 5 months old and you had to leave him home to be with me in the hospital. The strength that you showed me in those early days have stayed with me.
When did you start sleeping through the night again? Between a newborn and a 7 year old with diabetes you were up a lot during the night. All those nights when I would stick my finger out from underneath the covers so you could test me. How did you do it? Having a CGM back then would have been so much better and easier.
I was a difficult child. Stubborn as a bull. Wonder where I get that from? Unfortunately for you (and me) I was stubborn about being "normal" and pretending I didn't have diabetes. Those fights. Dear god, those fights we had about me not testing and not taking proper care of myself. You still loved me and was always right there if I ever needed you. When you and Dr. H decided that it was in my best interest to go on an insulin pump as an eleven year old I was not happy but you guys were doing what was in my best interest. I wish I could tell eleven year old me that going on the pump would change my life forever and be something I would feel lost without. In your motherly wisdom you know this, didn't you? You knew that it would be good for me.
We all have had our own way of handling my diagnosis of diabetes. Yours was to do whatever you could to get involved in JDRF; first in the local chapter then with research. You spent so much time traveling the world over reviewing grants and meeting the world's experts in diabetes. After every trip you would come home so excited about the research being done you could talk for hours about it and you did! At the time all that scientific stuff was so boring to me but I sat there listening and encouraging you. This was your outlet. This was your way of dealing.
I've now come to realize that while you were out there doing this for me you were also a champion to all the other people with diabetes. The hours you still spend reading grants and still traveling (although not as much as before, thank god) shows your amazing dedication.
A long time ago we made a promise to each other: you promised to work as hard as you could to find a cure and I promised to take good care of myself so that I would be healthy enough for that cure when it was found. You have not swayed from your promise and I have. I am working so hard now to keep my control tight. When I get frustrated and annoyed I think about you. I think about all that you have sacrificed so that I could have the best care possible and all the tools necessary at my disposal. I think about the strength you showed not only in those early days but in all the days since (7,862 days!) I think about the sleepless nights you were up worrying about me. I think about the hours you spent on airplanes traveling around the world reviewing different labs. I think about the phone call you received in Hong Kong from me crying into the phone saying I was in the hospital in DKA. I think about you and the love you have for me.
See, I can't think about diabetes and not think about you.
I love you, Mom, more than I could ever express.
Friday, March 19, 2010
The Shaky Hand
I need to post about Steve's surprised birthday trip last weekend to Vegas but I couldn't let today go by without a post in honor of a person who means the world to me.
A year ago today my dear grandmother, Nonna passed away in her sleep after battling COPD. My mom rushed down to Mexico to be by her mother's side and was there when Nonna died as gracefully as she had lived.
Nonna and I had an incredibly special relationship. She was a second mother to me. Nonna shared her love of all things Italian, cooking, learning, decorating, politics and history among many other things. She and I could spend hours on the phone just talking about anything and everything. She gave me the best advice.
In all honesty, this post is a lot harder than I thought it would be for me to write. Sadness is overwhelming and making it a little harder to breathe.
Nonna was a big part of my diabetes care.
The summer after my diagnosis Nonna took me and two of my cousins (we are the three eldest out of 7 grandchildren) to Rome for the summer. You see Rome was her favorite place on earth. After her divorce from my grandfather, Lito, she moved to Rome with my mom and aunt while my uncles stayed in Mexico. She didn't speak a lick of Italian but learned it while my mom and aunt were in school during the day. She learned to navigate her way around Rome by walking all over the city every day in her stilettos. When my cousins and I were old enough she wanted to share her love of Rome with us.
This was the first time I had been away from my parents for more than a night since I was diagnosed the fall before. I remember waiting for our flight to leave for Rome and I was accidentally served a regular coke instead of a diet coke. Of course Nonna was freaked out by my high blood sugars but we survived the long flight. Although I remember her testing me constantly. Where were CGMs then?!
While in Rome she carried around a big bag full of all my supplies including a scale. At every restaurant she would carefully measure my food at the table much to the embarrassment of myself and my cousins. We managed just fine. Despite all the gellato I missed out on that trip!
At age 12 when I went on the insulin pump my mom was still putting the infusion sets for me. I had had a difficult time giving myself shots but finally learned. The bent-needle infusion set was too much for me to handle. Soon after I started the pump I went down to Mexico to visit Nonna for the summer. I remember sitting on the couch in the library/den and my mom was showing her how to set the pump up and change sites. I wiped the alcohol swamp on my abdomen and my mom handed the bent-needle infusion set to Nonna to put in me. Seeing the steel bent needle shaking in her hand set me over the edge and I snatched it away from her and stuck it in myself.
"You did it!" Nonna and my mom said.
Nonna's loving shaking hand has motivated me ever since. I don't know where I would be had it not been for Nonna. Her shaking hand helped me take charge of my diabetes care. Words cannot express how much I love and miss her. She meant the world to me and I am so glad she is no longer suffering but I do miss her. A lot.
A year ago today my dear grandmother, Nonna passed away in her sleep after battling COPD. My mom rushed down to Mexico to be by her mother's side and was there when Nonna died as gracefully as she had lived.
Nonna and I had an incredibly special relationship. She was a second mother to me. Nonna shared her love of all things Italian, cooking, learning, decorating, politics and history among many other things. She and I could spend hours on the phone just talking about anything and everything. She gave me the best advice.
In all honesty, this post is a lot harder than I thought it would be for me to write. Sadness is overwhelming and making it a little harder to breathe.
Nonna was a big part of my diabetes care.
The summer after my diagnosis Nonna took me and two of my cousins (we are the three eldest out of 7 grandchildren) to Rome for the summer. You see Rome was her favorite place on earth. After her divorce from my grandfather, Lito, she moved to Rome with my mom and aunt while my uncles stayed in Mexico. She didn't speak a lick of Italian but learned it while my mom and aunt were in school during the day. She learned to navigate her way around Rome by walking all over the city every day in her stilettos. When my cousins and I were old enough she wanted to share her love of Rome with us.
This was the first time I had been away from my parents for more than a night since I was diagnosed the fall before. I remember waiting for our flight to leave for Rome and I was accidentally served a regular coke instead of a diet coke. Of course Nonna was freaked out by my high blood sugars but we survived the long flight. Although I remember her testing me constantly. Where were CGMs then?!
While in Rome she carried around a big bag full of all my supplies including a scale. At every restaurant she would carefully measure my food at the table much to the embarrassment of myself and my cousins. We managed just fine. Despite all the gellato I missed out on that trip!
At age 12 when I went on the insulin pump my mom was still putting the infusion sets for me. I had had a difficult time giving myself shots but finally learned. The bent-needle infusion set was too much for me to handle. Soon after I started the pump I went down to Mexico to visit Nonna for the summer. I remember sitting on the couch in the library/den and my mom was showing her how to set the pump up and change sites. I wiped the alcohol swamp on my abdomen and my mom handed the bent-needle infusion set to Nonna to put in me. Seeing the steel bent needle shaking in her hand set me over the edge and I snatched it away from her and stuck it in myself.
"You did it!" Nonna and my mom said.
Nonna's loving shaking hand has motivated me ever since. I don't know where I would be had it not been for Nonna. Her shaking hand helped me take charge of my diabetes care. Words cannot express how much I love and miss her. She meant the world to me and I am so glad she is no longer suffering but I do miss her. A lot.
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