My measly vocabulary is preventing me from putting into words how I feel about passing the one year mark of T's diagnosis. Instead, I thought I would let T do the talking. I was surprised at some of his answers and astonished by others. I am amazed at the young man he is and feel absolutely privileged and honored to be his mom.
Me: One year ago today on February 23, 2010, we were in a very different place than we are today. Can you tell me what you remember about the day you were diagnosed?
T: I went to school and felt really bad the whole day. We went and got all of the papers for the home study for school because we had a trip planned and we were leaving that day. I remember we went and got the oil changed in the truck and I drank a Pepsi. When we got home, everyone was getting ready for the trip, I had all ready packed, so I was resting on the couch. Dad and our friend Karen got home from work. I remember you were really worried about me, and asked Karen to check me over. We all talked about it, and I started feeling really bad. We decided I should go to the hospital. I remember being really cold that whole day. Even though it was 70 out. We got to the hospital and I sat in a chair. You went over to do paperwork, and then they called me straight back, in front of a lot other people that looked sick. I remember being in a hospital bed, but not getting into it. I remember being hooked up to an EKG machine in front of the nurses station and the nurse who put the IV in. I was glad she did a good job. I remember getting put into the back of an ambulance to go to Children's. I remember snippets of the ambulance ride, I wished I could see out the front of the ambulance instead of the back. When I got out of the ambulance they put me in a hall way and then into a hospital ER room. Honestly, that is about it from that day.
Me: When you say you felt bad at school, what do you mean by bad?
T: I felt like I was moving through molasses. I had heartburn really bad, and my legs hurt. I was cold and I had a headache.
Me: Do you think having type 1 has changed how you feel about life?
T: Yes, I do. I feel more driven. More confident. I know that I have ideas and things that can help manage type 1 and I want to make them happen. I feel like I have more of a purpose.
Me: What are some of the things that are challenging for you about having type 1?
T: Having to teach people about type 1 diabetes. The confusion between type 1 and type 2 is frustrating. The media portrays T1 and T2 as just "diabetes". The common person doesn't even know anything about T1 because they haven't seen T1 in the media. It drives me crazy that most articles about diabetes I get online are about diet and exercise. That is important for all healthy people, I eat well and work out a lot and I still have T1. There isn't anything I could've done to not get it and there isn't anything I can do now to get rid of it. I wish media would cover the struggles of having T1. How much work goes into not just staying "in range", but how much goes into just staying safe. I have to think about T1 all. the. time.
It's also frustrating to me that there isn't more technology specific for type 1 diabetes. I feel like if an Ipod or a phone can run hundreds of apps and serve hundreds of functions, why can my pump only serve one? And that is to do what I tell it to do. It's not like my life depends on it or anything. *rolls eyes*
Me: Can you talk about the clinical trial you are participating in and how and why you decided to do it?
T: I did the trial because I wanted as many tools as I could to manage the disease. The trial offered the best and most effective care. I wanted to help maintain the function I still had of my pancreas as long as possible. You never told me it would be a cure, but that it might help be part of finding a cure someday.
Me: Was it a hard decision?
T: No. I heard about it and researched it. When I had gained enough knowledge I really wanted to do it.
Me: Do you think we prepared you well enough for the trial? It's okay if you say no. We have always wondered.
T: Yeah. You guys told me I would feel the worst I had ever felt. Over. And over. You told me about the risks, the side effects and how bad it would be. You told me about the possible benefits. You never said it would work though. You did tell me there were hopes that it would.
Me: Did you believe us? About how bad it would be?
T: No. *laughs* I was like "Yeah, whatever. Those people were wimps."
Me: Were you scared?
T: No, not really. I was nervous when we walked in.
Me: Was it worse than you thought it would be?
T: Yes. It was worse than I thought it would be. But it was only as bad as you told me it would be. The only time I regretted it was in the beginning, when I didn't think I was getting the thymo. Even as bad as I felt, I never regretted it as soon as I realized I was getting the drug.
Me: Do you think the trial paid off?
T: Yes. My blood sugars are easier to manage. The test strip supplies help too. The education and getting to work with Dr. Gitelman is awesome.
Me: Do you have any advice for newly diagnosed families?
T: Learn as much as can so you know what to do and can better manage it. Take advantage of every opportunity to learn. Clinical trials aren't for everyone, but I think people should seriously consider them. I think the trial really changed my life. Educate yourself and the people around you. The more you know, the safer you will feel and the more comfortable your life will be.
Me: We have talked about the complexity of "the cure." Any thoughts?
T: To me a cure would mean that I would go through some sort of process and then I would never have to poke myself again. It would mean that type 1 was preventable. It would mean that my pancreas or some other organ made enough insulin that I wouldn't have to think about it any more.
Me: How do you want to mark the one year dia-versary of your diagnosis?
T: One word. PARTY.