My devotional this morning was on a topic that I am all too familiar with–humility. Sometimes it is so easy for us to claim that we practice humility and put others before ourselves. After all, is there anyone who is proud to say, “I could care less about the next person and simply want to spend my life achieving my own agenda“? If that’s you, I’ll kindly send a prayer your way! But back to the topic at hand, humility. How can one who is constantly battling their own demons, struggling day-to-day, and consistently trying to make it through the next 1/2 hour capable of stepping outside of themselves and serving others?
As I take some well-needed time to re-evaluate my schedule, health, and ultimately make lifestyle changes in an effort to be a better me, I’ve decided that I’d like to try out meal planning! Now, I’m a bit nervous about the consistency of this and how well I’ll be able to keep up with it, however, my hospitalization provided me with access to healthy and nutritious meals each day, and more than ever, I’m beginning to internalize the impact of a well-balanced diet on my Lupus management. Prior to my hospitalization, my mom pointed out that my appetite was very poor. I was eating child-sized portions of food and the combination of a gluten-free diet (stay tuned for a post on its effects) and minimal food intake was clearly impacting my body. All things considered, I am now even more aware of the value of a wholesome and balanced diet and truly want to work towards maintaining one.
Is today the day that I am going home?! I am anxiously awaiting this morning’s round of blood work to hear if I still need this kidney biopsy or not. In the midst of uncertainty, I woke up this morning and felt the need to share the beautiful view that graced my hospital window, along with an inspiring poem that was posted by a fellow blogger (Charis Psallo) several days ago. It is a well-known poem written by an anonymous poet that is bound to encourage you through whatever challenges life has brought you.
As I lay in my hospital bed with an IV in my arm and antibiotics and steroids being pumped into my system, my mind can’t help but wander: How are my students doing? I wish I had my laptop. Ugh, I have to do my lesson plans! I can’t get work off of my mind and quite frankly, it’s sad.
For the past several weeks, my Lupus symptoms have gone absolutely haywire. My fatigue has become unbearable, and I’ve developed daily high fevers that fluctuate between 101 and 103 degrees. But of course, I live in New York City, I have a hustler’s mentality, and I care about my team. So what do I do? I suck it up and deal. I self-diagnose and “treat” with over-the-counter medication. I continue to push myself to get dressed every morning. I get pretty, put a smile on, and get myself to work.
I’ve always prided myself on being an ambitious, hardworking, and dedicated person. Unfortunately, being all of these things AND having an autoimmune disease has driven me into the ground. One of the most challenging things I had to learn to do at the start of my diagnosis was to listen to my body rather than my head. In my head, I can do anything! Then my body begins to scream and argue, reminding me that this is not the case.
Then I ask myself, is this always realistic? I’m a single (non-married) woman living in a city that never sleeps. Where people work an average of at least 50 hours per week and the expectations are the same for us all–bills gotta get paid! Life doesn’t say, “She has Lupus, so let’s make her bills less and decrease her work load.” I work hard and do my best to take care of my responsibilities and naturally in the process, tend to put my health to the side at times.
This entire experience of being hospitalized has reminded me that I am no good to the people in my life (friends, family, colleagues, or students) if I’m confined to a bed. I HAVE to put my health first in order to do all of the things that I love doing. I KNOW how challenging it is to balance life, especially when battling with Lupus, but as someone who is going through the trenches right now, I truly encourage all sufferers to put your health first. The report that’s due tomorrow isn’t worth it. That extra hour at the gym isn’t worth it. Not even the late night dinner with your BFF is worth it. Take a step back, relax, and please be well.
Following this read, please take a moment to pray for me and my recovery. The Bible says “Pray without ceasing” (1 Thessalonians 5:17) and I truly believe that prayer in numbers can make mountains move!
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If you know anyone suffering with Lupus and/or any other “Invisible Disease”, please feel free to share with them directly!
I honestly believe that people suffering with invisible diseases are the best actors. I can only speak to my experience, but 99% of my day is spent acting. Considering that I work with 24 hyperactive 4th graders Monday through Friday (7:30-4:30), I am ALWAYS EXHAUSTED.
“Morning Joe! How’re you?!”
(“Do I say that I feel terrible and just want to go home?”)
“I’m well! How’re you?!
By the time Friday evening comes, I have an extremely difficult time thinking of anything other than hitting my bed. This feeling usually doesn’t go away. More recently, any time that I have off from work is spent sleeping—and I don’t mean taking a cat nap. I often come home around 5-6pm on Friday and sleep until 12am. Then I’ll go back to bed within the next 2 hours and wake up at 6am to feed and walk my pup…
Following Casper’s walk I may or may not take a moment to eat—I usually make a cup of tea and just go right back to bed until 1-2pm. I’m sure you get the point. This is the best picture of my weekends that I can paint for you. Occasionally I’ll feel some motivation to go out to dinner, but that motivation often fades within a few hours. Because of this, I also have a hard time making plans. Why be a flake when you can just not commit?
So I finally made the decision to start a blog that showcases my everyday struggles with Lupus. It’s definitely been a long time coming, and while I am a bit nervous to communicate my ups and downs, I KNOW that there are Lupies out there just like me that perhaps just need some encouragement every now and then, someone to talk to, or maybe even some updated information on Lupus research.
Any who, here’s a bit about my history with SLE (Systemic Lupus Erythematosus). During the fall semester of 2009 (I can’t believe its been that long), I began to feel consistently sick. It seemed that I’d caught the flu and was just not recovering from it. On top of feeling ill, I slowly began to develop joint pains. Over the course of 7 months, I got progressively worse–I was ALWAYS tired, I needed help doing everything from walking up and down stairs to getting dressed, and at 5’8 and 117 pounds, I was severely underweight.