Awareness of Early Symptoms: Our Diabetes Diagnosis Story

  
I read an article this morning about an 11 year old Tennessee girl who died this weekend from undiagnosed type 1 diabetes. She was ill, went to the emergency room, and was sent home undiagnosed. When she went back to the emergency room her blood sugar was 1600 and would not come down. This is utterly heartbreaking. Type 1 diabetes is a chronic autoimmune disease that requires a great deal of regular care, but it is manageable for most people. But without a diagnosis, a type 1 diabetic cannot get the insulin which her pancreas has stopped producing. Without insulin injections, a type 1 diabetic will die. Period. 

I have talked some about our diagnosis story, but after reading about this tragedy, I feel that I should try to tell our story in a way that will raise awareness about signs and symptoms of type 1 diabetes (t1d). If you are like I was, then you probably never think about your child having t1d; you may not even know what symptoms to look for. We were lucky, and, with some help, we caught it early, but many people do not catch it until there is a serious problem, and without knowing what symptoms to look for, you may not tell your doctor what she needs to know to diagnose your child. The main early symptoms of t1d are frequent urination, excessive thirst, and weight loss despite regular eating. 

If you notice the picture above you will see the major weight loss that my daughter went through. Could you guess how close together those two photos are? They were taken only 4 months apart. When I look at them side by side, I feel like a fool. I knew she was losing weight, but I thought she was just losing baby fat, just growing up. I figured she was getting taller, too, I just didn’t notice it as much. It didn’t seem so dramatic to me because I was with her everyday. She was eating the same, just getting thinner. In the weeks leading up to diagnosis, she also began drinking more water. Always needing a refill. To be honest, other than feeling annoyed at having to get her water all the time, I was glad she was drinking so much. I figured it was good for her and was contributing to her weight loss in a positive way.

A week before diagnosis, she was going to the bathroom a lot. She always needed to pee and it was usually urgent. I was a little concerned, but figured she was just drinking too much water. Then three nights in a row she wet the bed. She was peeing all the time! I didn’t know what to do. The weekend before diagnosis, my daughter spent the night with my parents-in-law. While I was out at dinner with my husband, my mother-in-law texted me that my daughter was peeing a lot. I was a little annoyed. I was on a date, and I already knew she was peeing a lot. I had warned my mother-in-law about the bed wetting even. I responded quickly and put it out of my mind, or I tried to. 

But I began to feel guilty. I felt like my mother-in-law would be displeased if I didn’t take my daughter to the doctor after this, so Monday morning I made an appointment for the following morning with my daughter’s pediatrician. While waiting to go in, I began googling my daughter’s symptoms. I figured it was a UTI or something like that. I didn’t think anything about the excessive thirst or weight loss. All I thought about was the peeing. A couple of times, t1d would come up as a possibility, but I was sure it wasn’t anything that serious. I was sure it was something minor, an annoyance more than anything.

Tuesday we went to the pediatrician. I talked to him about the peeing. I had mentioned thirst to the nurse who checked us in, but I didn’t think it was important. The nurse, though, mentioned it to the pediatrician after we had mostly decided it was a UTI. He came back in the room and asked again about thirst and for the first time about weight loss. I confirmed both, and his face looked worried. He checked sugars in her urine, and said we needed to go to the emergency room. I was shocked. I was sure it was not this. But in reality it was t1d. We almost missed a diagnosis because I didn’t think the symptoms were anything important. They seem so minor. We went to the emergency room and stayed for 3 days. My daughter was never admitted to PICU because we caught it before she was in critical danger. Many kids are not so lucky. Many kids are not diagnosed until they need to be in PICU. And some kids aren’t diagnosed in time. 

Our diagnosis story is pretty tame compared to most, to be honest. We were so lucky. We are so lucky. I now feel like my mother-in-law saved my daughter from potential danger by interrupting my date night with a concerned text. Who knows if I would have taken my daughter in to the pediatrician without that nudge. I couldn’t see what was right in front of me.

Ours is a happy story. We found out early and avoided having a horrible diagnosis story. What I want readers to get from this though is knowledge of early symptoms of t1d. I want every child who has this condition to be diagnosed the way Ada was–early and without danger. I want you to know what to tell your doctor. You might brush these symptoms off as something minor, but they are early signs of something major. You can save yourself a lot of heartache by taking them seriously. Sending love to all of the t1d warriors out there. We’re new to your ranks but proud to fight beside you.

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Why I Cut My Hair

  

I cried from 9am to 2pm yesterday basically nonstop. I spent most of that time lying in bed staring at the closed window with tears silently rolling down my face. Occasionally, I would sob, but it was mostly still and quiet. My daughter was playing downstairs most of that time. I took time to wake her up, feed her breakfast, and feed her lunch. I did her glucose checks and insulin shots. I was quiet and quick. I tried to make small talk with her, but mostly she talked to me blissfully unaware of my suffering.

At 2pm it was time for her snack. She was getting bored and antsy from playing alone all day. She told me she was having a bad day, and at all the guilt, I began crying and angrily said I was having a bad day, too. Immediately, I felt like a shit. I sat down next to her and, after apologizing, asked her if she remembered about my sickness that makes me sad. She said she did, and I told her that I was sick, so I felt really sad. She was sorry, I was sorry, we hugged, we snuggled, and I began to recover from my 5 hour crying jag.

That isn’t really how I wanted to get past my tunnel vision, but it did the job. I felt capable of doing more than lying in bed for the first time all day. I opened the closed window I had been staring at all morning. I ate something for the first time in 24 hours. I drank some water. And I cut my hair.

I have cut my own hair several times but not for at least 7 years. I have spent the last few months dyeing my hair various colors from blond to my current black; I like to play with my hair, and I am not the type to feel distraught about imperfect hair. I’ve worn my hair super long and pixie short. But when I cut my own hair it is usually because I need to get rid of weight. Not weight of hair, but weight of mind. I need a visible change to symbolize loss or pain or freedom. My illness is invisible but sometimes I need to see the change. Self harm is one way to see the pain, and, while I DO NOT recommend this coping mechanism, I think it illustrates what I’m talking about. With an invisible illness, one can feel compelled to make it visible. I figure, hair cutting is an easy, harmless way to do this. 

I am grieving. This is becoming more and more clear to me. I am selfishly grieving the loss of the life I had so carefully built to maintain my mental health. I am angry that I have to rebuild that life with accommodations for diabetes. I am angry that my child is facing this. I am afraid of the possibility of future complications, the never ending medical visits and bills. I am sad that she can’t just eat candy on a holiday like a normal kid. I am sad that my free spirited girl is tied to the need for an injection every 3 hours. I am angry that she is insulin dependent rather than just independent. I have all of these negative feelings built up over the last 2.5 months, and I have yet to really let go and label them as grief, fear, and anger. I have been in denial, doing the tasks but not accepting what they really mean.

So, in order to officially accept this new normal, ceremoniously usher in our life after diagnosis, and put away forever the before–the old normal–I cut off the weight of all the expectations I had for life before diagnosis. I pulled my hair into a ponytail, took the scissors, and cut off several inches. Immediately, I knew it had been the right decision. I feel better. I like how I look, but I really like how I feel. I will continue to grieve, I’m sure. This is a process and won’t disappear instantaneously. But I’m ready to begin accepting that things will forever be different but that I will adjust. I will get rid of the old and graciously accept the new. I will not only list off the benefits of learning through difficulty but I will believe them. I will accept that God has a plan for me and for Ada, and that our being together is not mere chance but purposeful. I will keep fighting for myself and for my daughter. I will not allow my own recovery to be stopped by diabetes. 

Running on Fumes

When I started this blog, it felt like I had nothing to lose by speaking my truth. I felt like it might even save me. And it did contribute to my avoiding another depressive episode. I told a lot of secrets, was very open, and tried to use positivity to balance the raw honesty.

But things have changed. I said what I wanted to say; I allowed for the blog to move in a new direction; I was ready to continue my focused effort to keep my mental health in check. And then type 1 diabetes came along. And everything changed.

It will have been 11 weeks ago tomorrow that we got Ada’s diagnosis. At first, honestly, I was kicking ass and taking names. I was focused, in control, and capable. But I’ve run out of gas. I’ve been working on fumes, and I feel like I’m about to breakdown. I feel like we’re all about to breakdown. My wonderful little family. We’re all hurting. We’re stressed. We’re isolated. And we don’t want to ask for help because we feel like we ought to be able to do it on our own.

I can’t help but ask God, “Why?” I don’t understand why God would give a child that needs special care to a mother who can hardly keep her own shit together. Why would God put depression and diabetes together? My daughter deserves better. She deserves someone who can do it all, so why did God give her me?

I am having a harder time putting my usual positive spin on things. I find myself crying more and more often–grieving more rather than less. And I don’t know what to do to change it. I have lost so much emotional balance in order to maintain my daughter’s blood sugar balance.

I feel like I have to be stronger than I feel, and that I must put on a strong face despite how I feel. Even here. I’m drowning, but I feel like it’s my own fault for not being stronger. Somewhere, at some point I made a mistake and it caused this Sisyphean struggle. Or it’s just chance without purpose or meaning. Either one seems depressing.

So, it seems like I’m worse, but I feel like it’s just that being the same is getting harder. I am mentally under pressure, emotionally unbalanced, physically negligent, spiritually struggling. But I am getting every insulin shot and blood glucose test done, and I am counting every carbohydrate. And they’re all recorded in nice spreadsheets. I am doing that without fail.

Struggles with Self-Worth

  
I try not to talk much about money publicly. In fact, I probably feel more comfortable talking about being suicidal than I do talking about finances. It doesn’t seem right to me, though. In fact, it’s heartbreaking to me that I seem to see money as more sacred than my own life sometimes. What is wrong with me? Anytime something financially unexpected happens, I feel compelled to do some mental flogging as penance–negative self talk, intentional self-loathing–because I do not earn money.

This post isn’t about my personal finances (we’re fine) but about this mentality that money reflects self-worth, which is so hard for me to shake. And yet, it paralyzes me, too. Rather than getting a paying job and working obsessively to feel worthy, I work constantly on my mental health and try hard to prove to myself that I am valuable without a paycheck. It’s just hard to believe sometimes. And I can’t decide if this is caused by misogyny, protestantism, capitalism, or if it is just truth. I feel lost in a nation that rewards the rich. I think I’m a lousy American, a lousy Christian, a lousy person. Lazy and parasitic. 

And I ask myself, am I sinning by not working or did God make me this way? Is my depression punishment or is life really about giving and receiving love? I’m so confused and distraught over this struggle in my head. But, in December, I committed to stop literally calculating my dollar value in terms of my consumption of food and energy. I am not going to contemplate how my death could save my family money no matter how strong the urge. This is the first time since December that my depression has told me that I should think about these things again. But I won’t.

Maybe I am in serious denial, and maybe we all have a monetary value that matters to God, but I’m trying to make sure that my kid has a mother she loves to give her her life-saving injections. That has to be enough. I have to believe that it is enough. But what if it isn’t?

To be honest, just avoiding a breakdown only to immediately have your child diagnosed with a chronic illness that requires a lot of attention (and, of course, money) has made the beginning of this year tough. I’m finding myself having a harder time fighting. But I am still fighting hard. Today when I wanted to start crunching numbers, I didn’t. I started writing this post instead. And now I feel confident that I will not do any monetary self-worth math today. This is a success. A big one. It’s the first test of one of my new, major, mental health commitments. And I passed. Keep fighting, friends, and, if you need to, focus on making it through just this moment before you worry about the next.

Excerpt from new ebook post “Who I Am”

I often get asked about why I didn’t take my husband’s last name when I got married 8 years ago (today!). I discuss it briefly in my new post on identity “Who I Am,” which will appear in the forthcoming ebook. Enjoy this little preview of another heartfelt post/chapter:

From 2001-2008, I made great strides in my goal to know and understand myself. During that time I had earned my bachelor’s degree and was working on my master’s degree. I had been able to travel and study while making friends, although I had suffered with my depression off an on. I felt that I finally understood Laura Grace Dykes–the unique being known by that name. So when I got married in 2008, I was quite resistant to changing my name. Yes, I am a feminist, and I feel that women should do whatever they want with their names, but my desire to keep my name was less political. I had worked hard over the last few years to understand Laura Grace Dykes, and now that I knew her, I didn’t want her to change. It is silly, I know, because it is just a name, but I felt like changing my name wouldn’t give my hard work the acknowledgment it deserved. And 8 years later I am still very pleased with my decision. I still feel that my name is the best label for me, and if I changed it I wouldn’t love it quite as much because I wouldn’t remember all the work and struggle behind owning it.
Keep fighting and love yourself!

Musical Reflections


About a year ago I started using a streaming service to listen to music, and I purchased a pair of high quality, refurbished headphones. Before these two purchases, I had not listened to much music since college other than instrumental music to meditate and YouTube to watch music videos I heard about on social media. Once I got a streaming subscription I began listening to music for at least an hour daily. It is a way for me to center myself, distract myself while doing housework, get inspiration for writing, and simply experience pleasure.
I often listen to music when I am working on the blog; it helps me focus and inspires my thought process. I have mentioned several songs I like on the blog including Kanye West’s “Runaway” and Aloe Blacc’s “The Man,” but many other posts I have written have been directly or indirectly inspired by other songs on my most listened to playlists. Today I thought I would look at a single lyric from 3 different songs that reflect some of the main ideas for the blog as a whole.

“Wake Me Up” by Avicii: “All this time I was finding myself, and I didn’t know I was lost.”

I like this lyric because it is fairly true that every moment is a chance for self-discovery and that sometimes we discover things about ourselves that we weren’t necessarily looking for. In my mind, both of these are wonderful things! It is really about how you look at yourself, your situation, and your circumstances. Taking time to reflect on your day, your life, your role, your goals, your dreams, your accomplishments can be very rewarding. Self-inventory keeps you in touch with yourself, and the more in touch with yourself you are, the more you will learn about yourself. And, in my opinion, the more you learn about yourself the more information you have to make good choices for your own well being. Besides, self-revelation can be truly liberating. To me, it makes me feel more in control and more confident in my choices. I don’t seek others’ approval as much because I know enough about myself to make an informed decision.

“Simple Man” by Lynyrd Skynyrd: “Be something you love and understand.”

One of the reasons I encourage self discovery is because, hopefully, it is a step toward self-acceptance. We are all unique beings, irreplaceable individuals with one chance of life on this earth. For me, self-acceptance is a necessity for living. Depression makes me so self-critical, self-loathing even, that when I am well enough, I try to make up for lost time by truly loving who I am and trying to live in a way that makes me happy. However, part of accepting myself is accepting my depression. I cannot get away from the fact that it has change and reformed my personality over 15 years. I am a different person as a result of my illness. When I accept that depression is part of my life–part of what makes me me–I can better understand what I need to be healthy and live a happy life. I know cannot ignore my depression. And yet I love myself, I love my home, my family, my work. And I understand who I am right now and why I have made the choices I’ve made. I feel comfortable in my own skin, and it took a lot of work to get here. I have spent years in therapy, journaling, working with family and friends to understand my issues, my fears, my desires, my goals. Being is a continual process that doesn’t end until we die. Continual self-reflection allows you to make the necessary changes to continue to accept and understand yourself.

“I” by Kendrick Lamar: “Seen enough make a motherf*cker scream, ‘I love myself!'”

This song (and whole album really) knocks the ball out of the park. When I listen to Kendrick Lamar talking about struggles with depression and suicidal ideation but then conclude that–despite everything going on in the world and his own head–he emphatically, intentionally loves himself, I get chills; I get inspired; I feel motivated to love myself. I love that this attitude is in direct opposition to the normal depression response to internal or external crises. When something bad happens in my life, my depression tells me that it is my fault. After years of depression and suicidal ideation, it often doesn’t take much to make me feel that something is so deeply my fault that I need to either self-harm or kill myself. If my husband is overwhelmed by too many papers to grade, my depression tells me that it is because I haven’t provided him with enough work time or that he works too much because I can’t work. Depression tells me that because it is my fault, I need to do something to rectify my mistake. I need to fix the situation and the ultimate fix is always suicide when my depression is in control. For Kendrick Lamar to respond to similar mental pressures by loving himself is a rebellion against the depression. It is a rebellion against any number of pressures that intend to make people feel they are worth less. This type of rebellious attitude can be so useful when facing depression because depression wants you to give in and you must fight back. One of your greatest weapons to fight depression is a well nurtured love for yourself.

When I am overwhelmed by depression and suicidal thoughts, when I cannot even wear my glasses because it is too much to see clearly, when I can’t eat, when I can’t stop crying or get out of bed, I get angry at my depression. I remember that I don’t deserve what I am going through. It is not my fault, and I do not deserve to die for my mistakes. I get so angry at the injustice of my illness and the lies it tells me that I want to scream back–“Enough of this! I love myself!” After years of fostering a love for myself that is how strongly I feel–I love myself fiercely because if I don’t I will fall victim to the lies of my depression.

So, really, these three song lyrics touch on 3 significant ideas that I repeatedly return to in the blog: finding yourself through self discovery, understanding yourself through self-acceptance, and loving yourself unconditionally. I really appreciate lyrics that positively support these ideas, and I especially enjoy finding this kind of positivity where I didn’t expect it. Music of all kinds can be a truly wonderful help through difficult times, if it is already a source of pleasure for you. One of the greatest thing about music is that there is so much of it, and if you take the time to look you can find just about anything. I often look for music that makes me want to dance and promotes some kind of positivity. Then when I am having a bad day, I just put on my headphones, turn on one of my playlists, and I am sensorily inundated with music that makes me want to move my body and lyrics that remind me of who I am and that I am a fighter. It doesn’t always work (some days nothing really works), but more often than not, if I persist, I can make some progress on getting myself back from the edge of depressive tunnel vision. And, as I’ve said before, every battle you can win against depression counts in a life-long war. Much love and happy listening!