I have diabetes, type 1, that is. I’ve had diabetes for almost four years now. I was diagnosed on Purim — talk about v’nahafochu! My life was definitely turned upside down and it was a major adjustment. I’m still adjusting but I manage and I live and I don’t let my diabetes dictate my life. Obviously, I factor it in my daily decisions and I take my disease into consideration for many of my actions, but I’m not Shira, the Diabetic or Shira who has diabetes, I’m Shira. Shira who is open about her diabetes and will share her story, especially now with November being Diabetes Awareness Month!
Diabetes managed to spring right up on me and my family, even though I had all of the symptoms. My symptoms were (and they follow general symptoms for diabetes):
- Weight Loss
- Frequent Urination
- Excessive Eating and Drinking
- General Not Feeling Well
and then I also had horrible leg cramps in the middle of the night. That was an extra one because none of the other symptoms were sending me to the doctor.
It was so obvious that something was wrong with me but I was able to rationalize everything. For the most part, my thought process at the time made perfect sense. Even now, it still makes sense to me.
Here’s the backstory: In the summer before I was diagnosed, I went on Achva West. It’s a Jewish traveling program that takes Jewish teens to the Western U.S. where they tour and hike and generally have an awesome time. I enjoyed that summer very much. I was active and I moved a lot from all of the walking and hiking-we hiked a lot! I also ate less. Not surprisingly, I came back home having lost weight from the program. But once I was back home, with no Yosemite or Grand Tetons to climb and a fridge full of food, my old eating and exercising habits were back, i.e., eating a lot and exercising not at all.
Symptom #1 Weight Loss
The school year started and I didn’t gain back any of the weight I had lost. In fact, it appeared that I was losing weight even though I was still eating a lot. I was getting compliments on how good I looked. I was wearing cute clothing that was once too small, but now fit like a glove. That should have alarmed me, but it didn’t. Looking back, I think I was happy to have lost weight and didn’t want to think about why it was happening. My Mother didn’t notice it much either, but when we went shopping this one time close to my diagnosis date and I bought a skirt in a small size, she was surprised that I could all of a sudden wear that size. Now, when I see Facebook photos of me from that time, I think about how sickly I look, but I also think that I looked nice because I was so thin. It wasn’t a healthy weight loss at all.
Symptom #2 Frequent Urination
I don’t want to discuss my bladder too much for all of you but, yes, I was in the bathroom A LOT. I remember running into a friend of mine in the bathroom at school almost all of the time. We saw each other so frequently in there that I joked about it saying “great bladders think alike.” Don’t worry, she does not have diabetes. So, yes, in the months before my diagnosis, the bathroom became my home away from home in my home. I would wake up almost every night desperately needing to urinate, do so, go back to sleep, and wake up a few hours later to go to the toilet again. It was not a fun cycle but it was one I repeated often in the months leading to my diabetes discovery. I never had to urinate as much as I did then, but I didn’t really think about it. I never woke up contemplating my frequent urination. I just wanted to go back to sleep.
Symptom #3 Excessive Eating and Drinking
If my only symptom for diabetes was excessive eating, I would have never known because I’ve been an excessive eater my whole life. I’m working on it, but that is the fact of the matter, so that symptom was not new. Moving on. The excessive thirst was apparent. I had people commenting right and left about how much I drank — meaning water, sodas, juices, and teas. I would go to school with two frozen water bottles (I like my water cold), buy an iced tea from the vending machine, and if the pizza caterer was there with his vast selection of Snapple Iced Tea, I would purchase one of those as well. I drank all of them as if I was never going to drink again. My thirst was totally unquenchable. One Shabbat at a friend’s house with other friends there as well, I asked my friend to pass me the water, she did, I poured it in my glass, chugged it, and we repeated this until the water pitcher had to be refilled. My friend commented “Wow, Shira. I don’t think I’ve seen anyone who likes water as much as you.” Yes, it is true. I am water’s #1 fan. But actually it was a symptom for this disease taking over my body. A second story is when my Mom brought home an 18.5 FL oz. bottle of Turkey Hill’s Strawberry Kiwi Lemonade. It was delicious and according to my never-ending thirst, the serving size was the entire bottle and I drank almost the whole thing. My mom thought I was selfish at the time for leaving her so little of the drink.
I’m going to skip tiredness and general not feeling well because like excessive eating, those symptoms were not as prevalent as the others. I was tired because I went to bed late and woke up to use the bathroom. My head hurt from time to time, but so what? It was probably from being tired…see! Rationalization.
On to my special symptom, leg cramps!
The toilet was not exclusive to my waking up at night (sorry, toilet), I also would wake up from painful leg cramps. I would hit my legs against the cold wall to try to relax them, I would massage them a little and the pain would go away and maybe return again later that night. I didn’t have these cramps every single night, but I had them often enough to complain to my mother. This would be our conversation.
Me: “Ma, my legs have been cramping up. It’s painful.”
Ma: “Do you want me to take you to the doctor?”
Me: “Nah, it’s okay. It’ll go away.”
We did this a few times. She always offered to take me to the doctor and finally one Sunday, we went. I told him what was bothering me, meaning I told him about the leg cramps. Not the unexplained weight loss, excessive thirst, and camp outs in the bathroom. My doctor said that maybe I’m getting these cramps because blood is not flowing there properly. He suggested that I get blood work done, so on Wednesday, on Ta’anit Esther, blood was drawn from my body to be tested. The next day, I spent Purim in the hospital.
Let me explain my “logical” thought process, now that you all have this information. I lost weight in the summer; I assumed that I did not gain any of it back. I thought my leg cramps meant that I was growing (I actually did grow half an inch!) and that my weight was redistributing itself in my body from that. I thought that it was good for me that I was drinking so much, that I was being healthy. I understood that drinking loads of water meant that I was going to have to urinate a lot. Everything connected. But I was drawing an incorrect conclusion.
Here is what was actually happening: my body attacked itself, which makes sense because diabetes is an auto-immune disease. My pancreas was producing barely any insulin, an essential hormone that takes glucose, the body’s main energy source and gives it to the cells. Without insulin, I had a lot of sugar floating around in my bloodstream, begging to go into the cells. Because my cells thought that I wasn’t giving them any energy, they said “you need to eat and drink to give us what we want”, hence my excessive eating and drinking. But still I had all of this extra sugar in me so my body got rid of it through frequent urination, and because my cells were still not receiving its energy from the glucose, it ate off of my fat, which is why I lost so much weight. The leg cramps? Yeah, I don’t know, but I haven’t had them since I was diagnosed.
I spent almost two days in the hospital, getting educated about the disease that would accompany me through everything for the rest of my life. There is no cure for type 1 diabetes. I learned how to carb count in accordance with my insulin to carb ratio, correction factor, target blood sugar range, and of course the amount of carbohydrates in the given food. My parents were beyond distraught so I put on a brave face, but I was very unhappy. Having diabetes meant I couldn’t eat what I wanted to or when I wanted to. It meant that I would have to eat a certain amount and not go over. I never had structure like that before. It got easier and less stressful as time went on and soon I realized that the system is not as strict and rigid as I thought it was.
That summer, I went on another traveling program: NCSY ICE. We went to Spain, Gibraltar, and Israel. I managed perfectly fine with my diabetes throughout the trip. Sadly, on one of the last Shabbats, I was very tired and deemed not fit to walk back to our hotel. Because of my condition, the head of the program insisted that I travel back to the hotel in a taxi. I cried over this because I had a point to prove: diabetes would not be an issue for me and I could persevere. I didn’t want to be labeled as the problem child. But I did ride in that taxi, and it was upsetting. My first thought when I got to the hotel was to read Tehilim, so I did. It made me feel better, but I was still upset. That was the only time I ever rode in a car on Shabbat and it happened because of my diabetes. Of course, I need to check my blood sugar so I do that on Shabbat as well and now that I have switched over to an insulin pump, I’m “breaking Shabbat” even more. I do it for my health because I have to. We rest on Shabbat, but the same cannot be said for diabetes. I do what I have to in order to remain healthy.
While that incident broke my spirit, there was another time when I was deeply disturbed. In high school, I had a teacher who told us about Shlomo Hamelech’s book of cures for every illness. Later on when Chizkiyahu was king, he hid the book from Bnei Yisrael. A student in the class asked why Melech Chizkiyahu would do such a thing and my teacher answered that Bnei Yisrael should not rely on a book, they should rely on Hashem. That is a totally understandable and acceptable answer. She continued by saying that if Bnei Yisrael were sick, they would need to ask Hashem for Teshuva because they must have done something to deserve their illness(!) Do you hear that? People who are ill did something to deserve it. As for me with my diabetes? Well, I must have done something truly horrific in my past life to deserve this incurable, life-altering disease. This teacher made this comment twice in class and asked it on a quiz and I wrote down that entire answer and yes, I got that question correct. On a separate occasion, this same teacher tried to give me “chizuk“(strength) when she told the entire class that she knew a man with diabetes, but that he lived a painful and miserable life with his diabetes and then subsequently died, from his diabetes. Thanks! I feel better already.
That got me to thinking though. Never had it crossed my mind that I did something to deserve diabetes. I mean, medically, it just happened to me. I have type 1 diabetes, the diabetes that kids and babies get. What did they do to deserve it? Nothing. I’m not pleased that I have diabetes, I have many days of frustration, annoyance, and sadness. This disease is sad. I wouldn’t wish it on my worst enemy. But then I think of it differently. I think there is a reason for everything and that God knows what He’s doing. I don’t understand His reasoning at the present moment but there are a few things that I’m thankful for with having this disease. I’m thankful for how old I was when I was diagnosed. I was not a baby or a little kid. I was old enough to take responsibility and to take charge with this new challenge. My parents did not have to prick my finger or inject insulin into me. I did that myself. While they felt my pain, they were never actually a source of it.
I’m also thankful to be alive in this day and age. A century ago, diabetes was a death sentence. There have been so many scientific advances since then and there are more to come. I’m able to take care of myself and be treated. It’s a wonderful, beautiful miracle. I’m also fortunate that I’m not ashamed of this disease and that I’m open about it. I want to answer your questions, even if they are dumb sometimes. Awareness is important. Knowledge is essential. There are too many people in the world suffering from diabetes to be ignorant about this disease. My story is only one of many and I hope it gave you some insight on what diabetes is about.