Having a chronic illness is difficult for me to wrap my mind around, incapable to fully understand. I’ve heard of autoimmune diseases before but never thought I would be one of its victims. Why me?
My first symptoms began when I was around 13 years old. I remember my toes turning blue and purple, painless and numb. I can’t remember if my toes improved or if I became desensitized. 5 years after my first rheumatologist visit, the doctor unable to tell what my body was doing, I found myself at a rheumatologist office again when I was 18. My symptoms were few and far between. The only signs of inflammation and irregular a antibodies (ANA) determined that something foreign was battling inside me. My toes would still turn blue and purple, especially when they were bare and exposed to colder air (even slightly below room temperature). But now, my toes would also turn white. It looked as if my digits were not receiving any blood flow and they would go completely numb. When the blood flow would return, it felt as if boiling hot water were being gushed back into my veins. I could feel this terribly burning sensation as it flowed through each individual vein. The extreme burning heat also felt as if minute shards of glass were also being transported through every area, quickly traveling. My job consisted of standing for 8-12 hours at a time. I would sit in my break room and cry, trying to think of a way to get me through the rest of the day. All I wanted to do was take two trash cans and fill them with intolerably hot water to submerge my aching feet into. This “flare” so to speak, lasted for roughly 4-6 months and I miraculously became symptom free.
In March of this year I was sitting outside one night and noticed my toes turning white again, losing circulation. I didn’t understand. It wasn’t cold outside and I would only experience the loss of blood flow when my feet became cold. That same month I developed a rash on my face. One that I still have 5 months later. There would be days that it looked like it was going to clear up, only to find the next morning it got even worse. Giant pockets of pus covered the top layer of my nose like cheetah print. Deep lesions would erode into my skin, often times bursting with blood. I spent hours each day trying to “doctor” my face to no avail. Soon after I developed another symptom that caught me by surprise. My finger joints became unbearably stiff that I could not even bend. They felt so hard and so fragile, I was afraid to try to move them in fear that they would break off like an icicle. The debilitating pain from the joint stiffness also included an unfathomable amount of swelling. My hands looked as if I blew up a latex glove right before it burst. Something was wrong. Very, very wrong I thought.
The unexplainable and random symptoms made me question what I was feeling and seeing. Was I going crazy? Is this all in my head? My doctor ordered a full lab work up for every possible autoimmune disease and every inflammation response in my body. I knew this sounded like an autoimmune disease but I was not convinced that this would be what was happening to me. I received a phone call a week later from my doctor, stating that my blood work came back and I tested positive/abnormal for 4 out of the 5 autoimmune tests. I was referred to a rheumatologist who specializes in autoimmune diseases and was unable to schedule my first visit for 4 months.
This. Wasn’t. Happening. I felt doomed. A death sentence. How was I suppose to get through the next 4 months with absolutely nothing to help?
I tried it all, anything and everything that would help me push through during that 4 month wait. I spent countless hours researching diseases, symptoms, treatment options, natural remedies. From anti inflammatories, massage therapy, cutting out gluten from my diet, trying every anti inflammatory food known to man, vitamins, supplements, injections, ice, heat, creams to narcotics. Little did any have a positive effect. I was anxiously waiting to see Dr. Michel, praying that each day would go by a little faster. I was ready for a diagnosis. I already knew and prepared myself that there would be no cure for my disease, yet I was eager to know how I could manage it.
Prior to my visit, I had no idea that all my symptoms were directly related to one another. In less than 5 minutes, Dr. Michel diagnosed me with SLE lupus. She said it was unusual for her to be so quick to diagnose but it was apparent that I was cursed with such an awful disease. I began treatment to help manage my flares and to stop my body from continuing on a downward spiral. SLE causes my body to be in an attack mode at all times. My body can not differentiate between what is healthy and normal vs. an infection, problem or threat. My antibodies are confused and attack my organs and tissues, eating them away and causing tons of inflammation. Unfortunately it takes a full 6 months for my treatment medication to be 100% effective, so I am even more frustrated that I’m having to wait.
The hardest part is being viewed as someone with a handicapped disability. Most days I’m unable to use my fingers for anything. I can’t twist off bottle caps, open bags, hold a utensil, turn on a faucet, brush my teeth, tie my shoes, unlock a door with a key… And the list goes on. It angers me so much that it brings me to tears. I feel so helpless when I have to ask someone for help with something as simple as turning a key.
You’ve never experienced fatigue the way lupus fatigue is. It hits me full speed like I’m driving straight into a brick wall. It mentally and physically knocks me down. Everything seems impossible and the only solution I believe would help would be to immediately go to sleep. When you work full time and are a full time student that is obviously not a feasible option. My symptoms fluctuate in waves. These waves have the ability to drastically change within a minutes time. I will go from feeling like I can conquer the day and I have the energy to feeling like I’m walking through an extremely thick fog that’s holding me back. I never know when it will change, when I’ll feel good or when I’ll feel like crap again, or the duration.
Living in Arizona is probably the worst place I could be now during my flare. This summer has been extremely difficult on my body. Photosensitivity is another symptom of SLE. Not only is my skin super sensitive to UV light (creating sores and lesions on my face) but the sun also feeds the internal flare in my body like adding fuel to fire. It causes a stronger auto immune response, resulting in my organs and tissues being attacked faster and harder. When it’s over 115 degrees outside I swear a hot car is double the temperature. Most days I would have to wait for my car to cool down before being able to drive. The temperature heat has also intensified my symptoms. Going outside for any length of time felt like I was trekking through the Sahara desert and already walked 50 miles. The heat causes my chest to tighten up and makes it difficult for me to breathe. Even when I walked from the parking lot to my car I would begin feeling like I could no longer breathe and my head would start pounding. I would start to see black spots and I could feel my heartbeat in my skull. That’s the scariest moment for me, sometimes I have to run to the nearest building with air conditioning and find a place to sit in fear that I’m about to pass out.
I’m unhappy with the battle my body has been trying to fight. I’m self conscious about the way the disease makes me look, especially feeling conscious about the rash on my face and the lack of exercise I’ve been unable to do. I hate having to have limitations for myself and not being able to push myself as hard as I normally do. SLE has caused me to struggle both physically and mentally.
I did not write my story for pity or attention. I don’t want anyone to feel sorry for me. The sole purpose of describing what my new life has been like is to educate others who do not understand. I hate when people ask me “why are you always sick?” Or when people question why I can’t do normal activities that I could do before and still want to do. Getting up each morning is a huge accomplishment for me. Doing the dishes and showing up to work each day are things I’m personally proud of now. I’ve tried not to be so hard on myself and to remain as positive as possible on some of my hard days.
Lupus is an incurable disease. There has not been any discoveries for treating the disease, only to treat the symptoms of the disease. In the 1950’s lupus was considered a lethal and terminal illness. After diagnosis, many patients would lose their fight within 5 years. I am happy to know that lupus is much more manageable now. I pray everyday that I wake up feeling good, positive and pain-free. I ultimately pray that researchers are able to embark on an actual cure for the disease. There are millions of people who are also fighting lupus, many with more severe cases than my own. Since the “ice bucket challenge” for ALS awareness has quickly become viral and has raised so many donations for research, I hope that one day people become more aware of lupus and are able to help fund and aid in research opportunities.
I am beyond grateful for those in my life who have tried to be as understanding as they can be with the little knowledge they’ve had about my disease. I truly am blessed to have a small support system that help lift me up daily. I encourage everyone to expand their knowledge about lupus and I hope this blog/vent has created a better understanding on what my life has become. I know that I can fight this and I won’t let it stop me!