Growing up, I’ve always been different. I was constantly sick, whether it be with my asthma, allergies, or some sort of infection I picked up from a classmate. My family, my doctors, and myself always knew I had a weak immune system and that I got sick easily, but little did we know how serious my illness was.
As a young child, I became a “sudden death, steroid dependent asthmatic,” which meant that I took a nasty steroid called “prednisone” – just 10 mg. of prednisone can help make swelling go down, but it also can make you retain water, gain weight like crazy, and have anger issues…yes, the steroid effect is like that of the hulk, except you don’t always turn green, but you can get nauseated if you don’t take it at the right time. I was taking up to 100 mg of prednisone a day. “Sudden death, steroid dependent asthmatic” also meant that when we would go to the doctor’s office when my physician was out of town we would be sent directly to the emergency room to be dealt with.
Asthma, by the way, is an auto-immune disease that, in time, may become dormant and no longer an ever present issue in people’s lives, many people who had childhood asthma have “grown out of it” as adults. Ironically, some people “grow into it” as adults. Neither was the case for me, for I have had and always will have asthma.
In addition to my asthma, my constant allergies caused me to have ear infections and sinus infections, constantly. My lowered immune system increased my likelihood of catching the common cold and the flu, no matter how many flu shots I had. The amount of medications I took, the highest I ever got as a child was something like thirty (30) pills a day, affected my body in more ways than I will ever find out, but it had some fairly unfortunate side effects. Starting out as a petite little girl like my mother, my weight increased with the steroids, as my bones, ironically, decreased in calcium, and the ability to absorb it, because of the steroids. This combination of weakening bones and lack of calcium causes a tiny little seventy pound three foot nothing girl to almost double her weight in a few months, which made me probably one of the youngest people in the world to have osteoporosis. (It didn’t help that one time I went to the doctor’s office and the nurse weighed my backpack and it weighed over 40 lbs…but that is a totally different story.)
Throughout this whole time, if you looked at me, you wouldn’t think I was sick. And when you could see that I was sick, I was still judged. I became judged by the eczema on my skin, being seen as unclean and unkempt by those who didn’t understand. I became judged when I couldn’t run around during P.E. because of a coughing fit. Judged that I was “so fat.” – To clarify, in talking to a former classmate of mine, she simply put it, “OH! I never thought you were fat, I just thought you got really, really pudgy.” Yes, thanks for that one.
I know people would look at me and look at my mom and judge why she had a fat child, what was this mother doing not caring for her child. Little did they know just how much this mother bent over backwards to just have her child have a semi-normal life. This mother, a chemist and college professor in her early twenties and got a scholarship in the Philippines to study for her masters in Purdue, sacrificed working full time be at home with her children and obtained a job at her daughter’s elementary school to make sure she could always be there to give a sense of security for the teachers who were terrified that this child may just drop at any moment, or as I thought at the time, to embarrass me for life. Thanks to my mom for being the awesome person she is, no one else thought it was embarrassing because everyone else loved her for the super amazing person I know her to be today.
After years of seeing local specialists for all different types of doctors (by then I had seen dermatologists, allergists, respiratory therapists, asthma specialists, immunologists, psychologists, and of course, many of our local emergency rooms), it was time to look state-wide to solve my seemingly incurable disease. In the fourth grade I started going to Stanford University, a three and a half hour drive from home, sacrificing my Thursdays in school (so what did Mr. Eaton teach in class every fourth Thursday?), to see an asthma and immunologist specialist. There I remember playing Bronkie the Bronchiasaurus (the Asthmatic Dinosaur with bronchitis…get it??) video game, a game that taught asthmatic children about taking medicines regularly and avoiding triggers…if anyone comes across this game, it means a lot to me, and I would love to have a copy…it was made for the Super Nintendo console…just saying.
After the monthly trips to Stanford were still not enough, I went to National Jewish Hospital in Denver, CO. There I missed over a month of school (which is honestly why I don’t know my preposition poem, I’m really sorry Mrs. Martin, but thank you for still passing me with flying colors, I know my essays sufficed) to be poked, prodded, stuffed, and worse, to try and diagnose me more. After the trip to NJH, I came home to monthly IV-IGEs for my allergies, an experimental monthly (or more) IV treatment that had to be administered in the hospital. These experimental treatments were thousands of dollars a drop, so thank God that we had insurance. The experimental part of the IV was that it was for people who had way too high an IGE count to take allergy shots because they are too allergic to one or many things (in my case, one page three columns full on what I was tested on). This IV treatment helped me tremendously to at least be able to ween from daily steroids, but did not reduce my IGE levels enough to ever start allergy shots. Unfortunately, this was an experimental drug and it was not approved by the FDA for reasons unknown to me, so I am unable to receive further treatment if I wanted to try the therapy again.
The experimental drug changed my life and I was able to ween off my prednisone, as I said, and just maintain regular corti-steroids (inhaled steroids) for my asthma and take my medication to be a fairly normal asthmatic child with allergies and constant sinus infections. My first email address was “allergicasthmatic” and I still have it until this day because it was so much a part of my life, and it taught my best friends how to spell “asthmatic.”
Because I was constantly sick with allergies and asthma and aches and pains attributed to my weight, my mom taught me that I will always have these things so I still needed to go to school. At the time I thought it was horrid that my mother would send me to school sick, but when I wasn’t contagious, I was only a threat to myself…and now? Now I am so grateful that my parents gave me an amazingly strong work ethic.
As I had mentioned before, and this one is the one that is still hard for me to share, I was having some “mental instability.” The reason I have a hard time sharing this one is because of all the stigmas that come with being sick, but most especially mental illness. People joke and say people are “not right in the head,” but some people truly are, and I am one of them. Does that mean I am insane? Possibly, but really not. It means I have my quirks, and I have my days.
I have a mix of the whole alphabet attributed to my craziness…PTSD for all the trauma from doctors offices, emergency rooms, asthma and allergy attacks, etc. (To this day I can only remember being in hospitals and not actually having the attacks, except for the time I was older, but when they were really bad, I don’t remember them as well. The doctor’s say that I have blacked it out in my memory), ADHD (This shocked my teachers because I was, “so smart” – which is not to say anything bad about my teachers, but to say “Hey, people who are sick can be smart, too.” Many people with asperger’s and autism are extremely smart, but you have to learn how to accentuate their strengths, like any person.), OCD (Partially known as Type A personality), Bi-Polar (not extreme, but known to have a sudden mood swing…I think it’s actually just called being a woman…or to not be sexist, and honestly be accurate, being human), and a slew of other things that I don’t quite remember. I also suffered from, and still do, anxiety and depression. This does not mean that I am constantly dark and moody, I hope you can tell from my posts that I am an extremely vibrant, passionate, and cheery person – the Devil won’t get me, as much as he will try.
What all these things mean, and have meant, is that I have to try my hardest not to get my mood to get me down. There are days where it does, but those are few and far between, and thankfully not the full day. I mean, really, who wouldn’t see that a girl could get depressed because she can’t sleepover at friends house because the parents are worried that she will have an asthma attack (and not understanding this until she was in her 20s), she can’t have a water balloon fight in the summer because she’s allergic to latex, she can’t eat the cake at her friend’s birthdays because of her allergies, she can’t run around care free because she has to carry a big emergency kit everywhere she goes…again, not feeling sorry for myself, just trying to add a little insight into life with invisible diseases. People didn’t see what was in my forty pound backpack, only that it was forty pounds. In it were emergency inhalers, emergency nebulizers, latex free tourniquets and gloves, and more emergency items.
People judge what they do not understand. People who aren’t sick judge those who are saying they don’t take care of themselves. People judge those with depression and say they should just be happy and disregard what a person is feeling. It doesn’t matter if the person shouldn’t feel the way they do, many times they know that and they don’t want to feel that way, and they still do. People shouldn’t judge others because you never know what is going on in someone else’s life.
Before college, I found out that I lacked in Vitamin D, absorbed from the sun, and was at less than 10% of a normal persons vitamin D levels…so that’s why for college I moved to a place that has sun only three months of the year, haha. Throughout college, I continued to get constant sinus infections and asthma attacks and constant backaches. I slept a lot, sometimes for sixteen hours a day (again, how did I graduate?). I attributed weight gain, headaches, and all my aches and sleep disorders to stress and college, thinking it would get better in the real world.
After graduation, I started working for the Walt Disney Company and also renewed my devotion to going to yoga to try and get fit. Unfortunately, with an extremely hectic schedule I was unable to continue with yoga. I started to get lots of back pains and was sore all the time. I worked in the sun and carried a big camera during part of my Disney career and I attributed the back pains, soreness and tiredness to that. When I moved to working indoors, I attributed to the fact that I was “too fat” and the fact that I was a poor college alternating from my futon and my inflatable bed because I was too cheap for a mattress, knowing that I may move.
Finally, when I moved back to Notre Dame and got a big girl bed and still had the constant aches and pains and lack of sleep, I knew it wasn’t because of the yoga I stopped a year before or anything in between. The aches and pains had gotten worse. At times I couldn’t move my hands, I couldn’t make fists, my back would stiffen up for no reason, I’d get a crick in my neck that I couldn’t move for days. So, I went to my doctor. My doctor immediately did blood tests and sent me to a rheumatologist, Dr. MaryAnn Domingo. God works in mysterious ways, Dr. Domingo graduated from med school in the class of my uncle in the Philippines. When I found this out, I knew that I was in good hands.
After many tests and trials, and still continuing today, I was recently diagnosed with Lupus, a long-term autoimmune disorder that can basically affect any and all organs of the body, that includes skin, kidneys, liver, digestion…I could keep going, but if you really care to know, here is an incomplete, but already long, list of a lot of the organs in our body: http://wiki.answers.com/Q/What_are_the_names_of_all_the_organs_in_the_human_body. Along with lupus comes its good friend Fibromyalgia, which basically just causes constant pain around the body because of overactive nerves. In part, all of these multiple diseases I have makes so much sense.
Lupus affects the body because it makes my immune system attack my body. My body sees not only foreign substances, but my own body, as something that does not belong and therefore, my body attacks my body. My own self-destruct, a slow and painful self-destruct, but none the less, a self destruct of my very own. This causes my body to over work in many areas. Fibromyalgia makes sense because it’s an overworking of nerves. Mental illnesses make sense because it’s an over working of the brain. Allergies make sense because my body, again, does not see the difference between my body and an allergen and overworks to get rid of the allergens. Asthma makes sense because of my poor over worked lungs. My lowered immune system makes sense, simply because I have a lowered immune system.
The people I tell that I have lupus think having lupus is terrible and that the pain I am going through is so unfair. Many people tell me how sorry for me they are. For me, lupus makes sense. Lupus is a God-send. Lupus proves that there is nothing wrong with me because something is wrong with me. It proves that I was trying to take care of myself and do things rights, but it wasn’t working because I have an incurable disease. It wasn’t my fault that I was sick all the time, it was my body’s fault, the way I was built.
It wasn’t my fault that I didn’t sleep much at night because of my aches pains and insomnia. Remember, how I said I slept for 16 hours? Well, that happened a few times, but I know that a really rare case I actually I slept for almost a whole day. Michael had come at 7 pm for dinner and I said I wasn’t hungry and was going to take a nap, he returned later and my roommate told him the nap turned into full on sleeping. He came the next day to pick me up for class and I would not wake up. I didn’t wake up until around dinner time that day, needless to say, I was hungry that time.
I was actually judged on this in college. People thought I didn’t take care of myself and that I was not a good influence. These were people I trusted and confided in. Unfortunately, my relationship and understanding of these people has never been the same when I found this out. At the time, I knew it wasn’t my fault that I had weird sleep patterns and that I was sick, it wasn’t something new to me, but something I had fought since I was younger.
My mom actually had one of my dearest teachers, Mr. Eaton, have a talk with me in elementary school about going to sleep at the right time and trying to get the correct amount of sleep. It’s ok, Mama, I forgive you because you didn’t know I couldn’t sleep, just that I wasn’t sleeping and you wanted me to be healthy.
However, these people who I cared for didn’t really know me, and didn’t ask or try, but they didn’t know I’d always been sick my whole life. They didn’t know that I have a disease that causes my body to self-destruct and that if I try and strengthen my immune system, it kills me more. (I used to not understand why when I took care of myself I seemed to get sicker. It wasn’t in my mind! I get more sick trying to strengthen my immune system because my immune system is what is attacking me!!!) These people judged me, and judged me blindly.
I’ve learned to deal with judgement, it comes with the territory of having invisible aches and pains. It makes me stronger, it makes me know that I am a fighter. I truly believe that my ability to be as functional as I am proves how much we should not judge others.
Lupus affects my ability to function sometimes. My lupus is a reawakening of how much we shouldn’t judge others. We never understand what is going on in other people’s lives. The person who cut you off may have been rushing to get to their child who broke their first bone. The person who was short to you may have just been told that they have cancer. The person who asks for the wheelchair when going to Disneyland, saying they can’t travel in the park without it…well, they just might have lupus and can get to and from the car but once they head to the park it’s too much walking and it’s too exhausting. To all the wonderful guests at Disney, I’m sorry if I participated in the judging and making fun of the fact that you rented an electrical wheelchair…that may have been one of my lowest points.
The thing I’ve had to learn with lupus is to accept that I am human and that I am weak. I suffer from the same judgement I wish others not to do upon me or others. I am ashamed to know that down the road I may need to use a walker or be in a wheelchair. Why? It shows I am weak. However, I am a hypocrite when I say “don’t judge others” because I judge myself. This is still something that I have to learn. While I learn to not judge myself, I ask others to please learn to not judge others. Give patience. Give love. Spread kindness. Make an LCBD and make it today.