Living with an Invisible Illness
While I love sharing my healthy creations, I wanted to write a blog post that gives you a little more insight into my life than a colorful food photo might. If you've read my About Me section, you know that I have two chronic health conditions: Primary Immunodeficiency (PI), a genetic condition I was born with, and Lupus, an autoimmune condition that I was diagnosed with in the summer of 2016. Both of these illnesses radically altered my life. Have they brought hardship? Yes. Have they brought pain? Yes, incredibly so. But, they have also taught me invaluable lessons about the body, love, and the resiliency of our minds. Wisdom I never would have been able to fully comprehend at this age if I had not experienced these health hardships.
Ever since I can remember, I was labeled 'the sick kid'. Oddly enough, even as the sick kid, I was told that I was 'faking it' for the majority of my younger life. Why? Because I didn't look chronically ill, even with purple circles under my eyes (which I now know was an indicator to my weakened immune system). After I was diagnosed with Primary Immunodeficiency at age 11, I continued to struggle with my health identity. In middle school, I went through a brief yet dark period of depression, which I think directly correlated to my initial diagnosis. I was still so young and afraid of what this condition could mean for my future, which caused me to feel extremely isolated from my peers.
In high school and college I desperately wanted to be like everyone else - active, outgoing, NORMAL. I was on sports teams, lived for concerts, traveled around the world, joined a sorority, went to parties, pulled all nighters; the things I thought a cool, healthy person would do. For awhile in college, I was able to finally attain an image I was happy with. Although it's so silly for me to admit now, being able to rush a sorority and 'never miss a party' made me feel like I could actually be like my perfectly healthy friends, instead of the 'sick kid' stigma that defined most of my younger life. This 'normal' behavior was fun for a few months, but quickly became exhausting. I knew that I was not living life as the 'real' me, but instead living life as the 'fun Celina' I thought people wanted to see.
Towards the end of college, I became more accepting of myself and started to own my individuality. The summer before my senior year I was offered an internship at an advertising agency in San Francisco, and moved up north for 3 months. It was a life changing summer, to put it shortly. The friendships I made, design skills I gained, and time spent in my (first!) apartment kitchen I will treasure forever. In fact, it was in that miniature San Francisco kitchen where I learned to cut and cook spaghetti squash, make overnight oats, and realize that black beans in brownies COULD be delicious. To be honest, it was also the first time I felt comfortable with my ‘healthy’ diet around my peers. I didn’t have to down shots at a dingy bar to prove i was ‘fun’, or feel ashamed for asking if a dish could be prepared without dairy. In fact, my coworkers were excited to try the creations I brought in (I specifically remember a vegan + gluten free carrot cake that was a hit).
After a magical San Francisco summer, I returned to college refreshed and determined to finish my senior year on a positive note. My health was still ‘ok’ (not great), but I put mostly all of my focus into internships and academics. As a result, I didn't pause to recognize that my hair had become brittle and my weight was always down despite my large appetite.
My primary care doctor for all of my college years had convinced me that my ailments were from an eating disorder. I kid you not, I brought family and friends to my appointments so they could testify that I was a BIG eater and had a healthy diet. I would even bring in large containers of meal prepped food and eat them in the doctor's office to show I that I was not restricting my food intake. To top it all off, I also developed another symptom - a red facial rash that would spread over my cheeks intermittently. I was told that the rash was caused by anxiety, and started seeing a psychologist. To be clear: I fully support therapy, but in this case, I was lead to believe that a physical symptom was purely mental, so I brushed it off- for YEARS.
Now let's fast forward to a year out of college - I had just returned from an amazing two week trip around Japan with my boyfriend, and was working full time as a digital designer at an agency with fabulous coworkers who I loved. Life, on paper (and on Instagram) looked pretty perfect.
However, each day I would wake up with extreme fatigue - taking the 20 minute walk to work became a challenge because of my achy joints. At this point, my hair loss and struggle to keep my weight up became ‘normal’ symptoms, as faded to the background. The one symptom I could not ignore, however, was my ‘red face’. It would come at random times of the day, and last for hours. My face felt hot and prickly- and there was nothing I could do it make it stop. One day it happened at work, and I ran to the nearest pharmacy in the middle of the day, hoping that Benadryl would help. This wasn’t an allergic reaction. It wasn’t because I was anxious. It wasn’t because of an eating disorder. It was because I have two chronic illnesses - the second one, I was to about to learn, was Lupus.
I remember the day perfectly - waking up on a breezy day in July feeling hotter than usual, and with a few pimple-like red spots around my body. I recognized this as unusual- but made myself go to work. Push through it. Typical Celina move.
Throughout the day the red spots grew larger, and the fever chills began. I made it through the day, but collapsed in bed once I got home. My fever grew to 103 that night at that point, I knew that something was very, very wrong. The next morning I drove myself to my Immunologist, who saw the pustules around my body and admitted me to the hospital. I thought that I would be safe once there were doctors attending to me, but my journey to a diagnosis was just beginning. After two weeks of...installing a PICC line, numerous x-rays, ultrasounds, skin biopsies, blood transfusions, 4 spinal taps, a bronchoscopy, and massive doses of antifungals and steroids (and more)...I was finally diagnosed with Systemic Lupus Erythematosus (SLE), or Lupus for short.
It goes without saying that my time in the hospital was the scariest experience of my life. My mind has blocked out many of my conversations from the time, but the one thing I do recall clearly was the inexplicable, constant pain. To this day I cannot imagine people who suffer that kind of pain daily. The steroids, although riddled with awful side effects, were the only thing that saved my life. Although I was not aware of this at the time, the doctors told my parents that my kidneys were failing, and the large dose of steroids was their best bet to calming the inflammation consuming my body. After the three massive doses of steroids, my pain gradually subsided. I could move my head without crippling migraines and neck pain, and actually look outside. It seemed like all of the sudden, after being poked and pricked for weeks, I was discharged and let back into the world.
I took about two months off work to recover and slowly build up my strength. Looking back, I know I should have taken more time to care for myself - but at the time I wanted to steady routine to return to. If you are ever in a serious health situation (which i hope you are not!) I HIGHLY suggest taking more time off than you think you need to recover.
After sitting in a hospital bed for that long, my legs were extremely weak - Walking up and down stairs was a daily challenge. Making spinach pancakes and washing the dishes became a workout. The scariest part of recovery though, was going back into the ‘world’ as a changed woman. Every scent, sight, sound, and taste was tremendously overwhelming for me (in large part thanks to the oral steroids i was put on). Despite all of the hardships that came with my Lupus diagnosis (more pills, more doctors, more infusions, more lifestyle changes), I can confidently say that the period of time between being discharged and returning to work was when I fully appreciated life, and loved myself the most.
Today marks two years since I was admitted to the hospital for my Lupus flare, and BOY has life changed. I'd like to say that I've found the perfect team of doctors and that my health is 100% better than it ever was, but, in reality, my life with chronic illness(es) fluctuates daily. Some days I can't get out of bed because of fatigue and achy joints, and some days I am able to get up and travel the world. The one thing I will say is that I am more determined than ever to show up every day and really work on myself; physically, mentally, and spiritually. And, because of this fact, I'm positive that one day I will achieve the health that I've been searching for my whole life.
There are so many reasons why I chose to write this post for you all.
First, I want others who may have suffered or are still suffering with an illness to know that you are not alone - there are so many people standing beside you.
Second, I wanted you to learn a little bit more about my story, and why healthy food and lifestyle are so important to me.
Another reason, which I just realized, was to remind everyone (including myself) of the incredible gift of life. It is crazy how, after such a life-changing experience, things can return to the way they were. It’s also remarkably easy to tune out the songs of birds in the morning, or look down at your phone while walking, or wolf down a meal without appreciating the flavors. BUT, it is so, so much more powerful when you can be mindful and appreciative of even the most typical moments in life.
I am by no means perfect at this, but everything in life is a work in progress, right?
If you’ve read this far, thank you for taking the time to hear my story (aka ramblings). I hope you’ve gained something, even if it’s a recipe for a gluten-free goodie on another part of my blog.
Now go out and do something positive - text a friend or family member you love, go on a walk, or cook yourself a nice meal! We are so lucky to be alive, let’s make the most of it :)
Lots of love,