T1D: A Family Disease
From my Seth
Being married to someone with Type One Diabetes (T1D) is not always easy. Don't get me wrong, I’m not suggesting that it affects me nearly as much as someone that has T1D, but I think it is about as close of an experience as you can have. Often times I catch myself saying "we" when referring to diagnosis or other aspects of living with T1D. I will admit that I think in many ways it has made me a better and stronger person, but mostly just my wife. :-)
Lindsay was diagnosed at age 25 just three and a half years into our marriage. Diagnosis was hard on both of us. Looking back, it was a real wake up call. Being faced with mortality at an age where those thoughts have never come into play was a hard pill to swallow. I just remember the fear and sadness during that initial diagnosis period. Thinking that we knew that she was going to die and there was nothing that we could do about it...seems almost silly now. Being a spouse of someone with T1D, AKA Type 3, has taught me many things over the years...far too many to list, but here's an attempt.
-Something to think about at every meal. One of the first things that you learn as a spouse is to count carbs. I remember building a library of printouts with nutrition information from various restaurants. We had a food scale and all sorts of little notes to estimate and come up with a number to then figure out a bolus with. Using little tricks to help estimate when no good "info" was available. For example-1 skittle = 1 carb. So I would picture how many skittles it would take to make up the volume of the sweet treat in question and go from there.
-A reason for me to be healthy. Eventually, we realized that one of the ways that we can take back control is to live healthy in other ways. I think that Linds' diagnosis has definitely had a positive impact on my health. It just made sense to cut out the unhealthy things that we could. Especially lately, she has become this amazing health goddess (more on that later) that definitely has a positive influence on me and others, and my underdeveloped eating/living habits. I sometimes wonder where I would be without her.
-Educating myself on new treatments & technologies. Before diagnosis I wasn't as vested in politics or charity, or anything other than just trying to be good at my job and have as much fun as I could at the same time. Now I have a vested interest in different charitable organizations, health care, and many broad and very specific research projects and clinical trials. I guess you could say that it is kind of like going from having a sports game on TV in the background to all of a sudden being on the field!
-Maybe we won't have children. I kind of always thought that children would come to us later in life, similar to the way it happened for my parents, maybe mid to late 30s. I wanted to finish my education, pay off our debts, build savings, travel, and have the tough part of my career over with before slowing down for kids. But then came TID. Now any pregnancy is considered high risk. Make that later in life and the risk goes up...the risk of complications or birth defects go up...but that still doesn't make me want children now. Neither does Linds...so maybe we won’t have children. Just another adjustment.
-Food decisions are complicated and can be stressful. There are many factors involved in eating since diagnosis. Honestly, for the last five or so years I have been pretty removed from the bolus calculations. Especially since Linds began pumping, it usually happens so fast I may just catch a little green flash through her shirt or hear a couple faint beeps...no need for me to get in the way there...the things that do come into play every time we eat are things like time of day, activity level, quality of food, current active insulin, etc. Will there be enough time to digest this? Will it digest in the middle of the night and make the next morning's BG (which means the rest of the day) painful. Is it worth the spike? We both love food, but there are still many times that plans are changed or things are taken off of the table based on one of those factors. Things that just wouldn't come into play for someone without T1D.
-A perfect BG 100% of the time-is impossible. Yup. I learned early on that BG and A1C can be very personal. It can represent success and failure; victory or defeat. It is what it is, and it doesn't always make sense. Celebrate the victories, and just try to learn something from the defeats. Be supportive and move on, because as much as I think I know, until my pancreas shits the bed, I have no right to criticize or question, so I don't.
-Be helpful, but know when it is not required. Everyone has internal struggles of their own. Whether its food choices, money management, exercise habits, or something else. But someone with T1D has all of those same anxieties plus the weight of the never ending nagging cycle of highs, lows, and constant BG monitoring. The worst thing that you can do is micro manage. Support is key, not pressure.
-I am in constant awe. So, early on in diagnosis we were concerned about being able to do normal things again. Let me just say that this is no longer a concern...I am continually amazed by how my beautiful wife (with T1D) continues to impress and outdo me. Not only is she kicking diabetes' ass, but she is kicking life's ass! From her fabulous job, to her amazing blog, being selected as a Greatist Ambassador, being elected to the board of directors for the JDRF...you name it, she is good at it. I admit, I didn't believe the stories about ping pong, but...if anyone ever wants to play doubles she is on my team! I think what she has figured out is what so many struggle to, just do what you love to do and the rest will take care of itself. And don't let anything stand in your way, especially T1D. I love you, babe.
From my Sister
I was 15 years old when my sister was diagnosed with T1D. We are 10 years apart, she was 25, and the age gap was enough that we had not grown as close as we are now. It wasn't until recently, about a year or two ago, that I really started asking my sister questions about T1D and the Paleo lifestyle. Until she was diagnosed I never knew that there were so many different types of diabetes, each unique, and have since learned more about each type in order to educate myself. I find myself educating others as well because I know how important it is to my sister and in general, that others be well-informed. Now that I am 22, we are closer than ever, because the age gap doesn't seem like such a big deal anymore. Looking back, I wish that I would have been less of a self-absorbed adolescent when she was diagnosed, because I realize that she may have needed me then. I saw my parents and the rest of my family give my sister the support that she needed so I guess I thought that was enough. Now I talk to my sister everyday through email, text, Facebook, etc. I also try to help her out as much as possible through donating to JDRF. I totally understand the concept of this disease being a family disease, much like many other diseases are. While writing this I feel very emotional, because I know at this point all I can do is give my sister my support and love, and I have no power to take away her disease, which I very much wish I was able to do. My sister is one of the strongest, most intelligent, and persevering people that I know. I hope someday that there is a cure for T1D and that my sister can once again live a diabetes-free life. I love you, big sis!
From my Mom
Concern, worry and fear were a few of the emotions that I felt the day Lindsay called and said she was in the hospital. They were testing her blood sugar because it was extremely high. Lindsay and Seth were living in Puerto Rico which made it even more difficult for me. I knew very little about diabetes and even less about how the disease changes your life forever. The fact that Seth was with her gave me great comfort because I knew together that they would figure it out; and they have. Seth says that “they” have diabetes because when a family member has this disease, the whole family feels the disease right along with the person that is diagnosed.
I wasn’t sure what I could do to help so I tried to be supportive and listen when Lindsay would call because I knew she was having a very difficult time dealing with the fact that her life had just been changed forever. She emailed and called and I remember crying after reading and listening to what she was going through. If it was this difficult for me it must have been terrifying for her.
Once diagnosed the Navy moved them toVirginia where the health care was much better and she could get more specialized care and I felt a little better knowing she was in the US.
I knew deep down that she was intelligent, determined and resilient and that eventually her and Seth could work through everything but it took a few years before that happened. Lindsay is a totally different person now than she was the day she was diagnosed with T1D. She is confident, driven and motivated and never stops learning how to become a healthier person. She is an inspiration to me because I’ve seen firsthand what she’s gone through to get to this point in her life and she never stops working and fighting to be better.
I remember telling Lindsay shortly after she was diagnosed that I believe everything happens for a reason. We may not know the reason for a long time, but there is a reason. I believe Lindsay was diagnosed with diabetes because she could handle it. Because of diabetes she has made lifelong friends that she might never have made if she hadn’t been diagnosed. She has a job that she loves and is contributing to help people diagnosed with diabetes live happier, healthier lives. She is on the Board of Directors for the San Diego chapter of JDRF, has mentored young people with diabetes and is extremely involved in the diabetes world. She manages her diabetes, it doesn’t manage her. I’m extremely proud of how far she has come and the strides she has made in managing this life changing diagnosis.
As her mom, of course, I still worry but I’m no longer afraid because I know that Lindsay is in control of her life and she’s doing an amazing job!!!!
From my Dad
How T1 Has Changed Me
A Father’s Perspective
Previously, I have shared with Lindsay some of my feelings as she was diagnosed with T1D. Those feelings included: disbelief and denial, realization and frustration, hope, belief, understanding and patience.
I have three older sisters and after I shared that Lindsay was diagnosed with T1 one of them said, “Lindsay is strong and smart and will manage it.” Darn it, I just hate it when older sisters are right! (Except in this case). With unending support from her husband Seth, Lindsay has been strong, smart and managed her diabetes. I wish you could experience how Lindsay kicks diabetes ass every day; whether it is zip lining through the jungles of Belize or hiking in California, or gardening and her daily activities at work or blogging and preparing healthy foods, she consistently lives life by beating diabetes. You would think diabetes would just surrender, but it does not, but neither does Lindsay. So, my initial feelings of disbelief, denial, and frustration have turned completely into hope, belief, understanding, and patience.
I originally could not comprehend why my daughter would be diagnosed with such a disease. I had often felt that everything happens for a reason and not that long ago a 4 year old showed me that every single thing we do every day has purpose, or at least it should. He asked me all day long, “Why are you doing that? What are you doing that for?” He showed me every action we take has purpose. Everything we do is important to someone. Lindsay’s purpose is to manage her diabetes every day.
One of my recent realizations has been on perspectives. You never really can experience a life altering situation unless it affects you or someone close to you. I just completed graduate studies that included how important it is to understand things from other people’s perspectives. By Lindsay managing her diabetes she has shown me a different perspective of those that are diagnosed and manage a life threatening disease.
I have learned so much by Lindsay dominating diabetes; I have learned understanding and patience. I am a better person because of the way Lindsay manages her diabetes. The only way I may not be better is that I still have feelings of guilt. I feel guilty my daughter had to have this disease, but since someone had to have it, there is no one better able to handle it than Lindsay.
In my original thoughts I offered to bargain or a deal:
“I even started to bargain with a higher power. Here is the deal. Lindsay doesn’t deserve it, did nothing to deserve it, and shouldn’t have it, I said. So, if someone MUST have it, it should be me. My habits dictate that I should have it. In fact my wife warns me about getting it. I’ve been rotten enough to deserve it. So let’s work out a trade. I get it and Lindsay does not. No deal, I cried out of sadness, anger, and disgust.
My offer still stands, but I am no longer sad, angry or disgusted. I celebrate every day that Lindsay lives and works toward a cure. It is because of a Father’s perspective; I ask that you would donate until it hurts.
Please consider helping me reach my fundraising goal this year by donating here: http://www2.jdrf.org/goto/letscurelinds, you may also mail a personal check made out to JDRF San Diego, to my attention at 3157 Salmon St. San Diego, CA 92124.
Thank you to you for your support, and to my family-clearly I couldn’t do this without them :-)
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