Lupus and Chemotherapy

This is after I decided to shave my head because I couldn't take seeing my hair fall off due to Chemotherapy.




Me with my Boyfriend. This was one of the last time I dressed up before I shaved my head. (On 50 mg of prednisone)

First of all, Lupus is an auto-immune disease that is not contagious. There are four different types of Lupus; Neonatal Lupus, Drug-induced Lupus, Discoid Lupus Erythematosus, and Systemic Lupus Erythematosus. Neonatal Lupus is temporary and affects a newborn and is passed from mother to child. Drug-induced Lupus occurs when a person experiences Lupus like symptoms that is produced by taking drugs (medication). The Lupus symptoms stop when the medication is no longer taken. Discoid Lupus Erythematosus can affect the face and any part of the body and involves inflammatory, painful sores that can occur anywhere on the body. It basically affects the skin and scarring often occurs and the rash often appears on the face a a butterfly rash. Once the Lupus no longer just affects the skin and begins to affect and attack organs the Discoid Lupus then is recognized as Systemic Lupus Erythematosus. With SLE, your body is being attacked by your own body. It's an overactive immune system that is incapable of distinguishing the bad tissues from good cells. SLE can damage and attack any organ and is accompanied by arthritis.

My name is Liz. I am 24 years old and the reason why I know so much about Lupus and have such a great interest in the disease is because I have it. It began as Discoid Lupus when I discovered a butterfly rash on my face and it rapidly transformed into SLE. I am currently undergoing chemotherapy because my Lupus has decided to attack my kidneys. Besides being on steroids, prednisone, I am on lisinopril, clonidine, lasix, cellcept and Cytoxan. I am currently on 50 mg of prednisone, 80 mg of lisinopril, .4 mg of clonidine, 40 mg of lasix, 1500 mg of cellcept a day and cytoxan treatment. Being on so much medication has taken a toll on me not only physically but has tremendously devastated me emotionally. Often times, it's not the physical pain that tears and breaks me down, it's the stress and desire and need to be healthy that breaks my heart.

Being on Chemotherapy, I lost my hair after my first treatment in April. I was heartbroken. My hair was falling off in chunks and was all over my car, room, bedroom floor, bed and me. It was tremendously difficult finding my hair everywhere and it did not get any easier. I don't think it's anything anyone would ever get use to. Eventually, I couldn't take it anymore. I was not about to watch my hair fall off completely. Not only was it a mess, but it was hurting my feelings and my heart couldn't bare it anymore. I asked my boyfriend of basically 6 years (he's the best) to shave my head for me. I watched from the mirror as he used his buzzer to strip my head of my beloved hair and I couldn't help but just wonder why this was happening. In so many ways I found the experience liberating yet still afflicting. It was liberating in a sense that I was taking things in my own hands and shaving off the hair rather than painfully watching it fall off by itself and allowing it to affect me so much and it was depressing that I have to go through this in the first place.

It's been especially frustrating for me because I've been sick since the end of November of 2009. During that time my body was not producing enough blood cells. I was weak, pale and incredibly sick, but was determined to finish and do well in my classes so I proceeded to put off going to the Rheumatologist. I finished my research papers and finals, recieved Bs and headed off to the hospital. I was scolded by my doctors and discovered that my hemoglobin level was 4. I was in shock, but stupidly proud that I was able to do so well in my classes and finish off so much work while being that sick. You have to understand, I've had six medical withdraws from my University and I was not about to let Lupus stop me from finishing another semester. Enough was enough and I simply was too stubborn to give in. It was more than just a grade, it was me fightling against Lupus. It was my way of not allowing Lupus to diminish my dreams any further and stopping me from any achievements. Please don't misunderstand me, I recommend that when you're feeling sick that you should go to the doctor and get it checked out immediately and not be as stupid as I was.

Because I was so stubborn, I did not have enough blood and had to receive a blood transplant. I was given red blood cells and platelets. After the blood transplant, we had to figure out why my body was not producing enough blood because my Lupus seemed to be okay and my kidney functions were stable even though I have kidney nephritits. There was a chance of leukemia being the cause or my medication such as plaquenil and cellcept suppressing my bone marrow function. So in order to find out, we had to run some tests...my hematologist decided that we needed to have a bone marrow biopsy. Although, the biopsy was quick, it was incredibly painful and I remember letting out a loud cry for God to help me. I was under so much stress and was frightened for having Lupus was tough enough, I couldn't even imagine being diagnosed with leukemia also. When the results came back, I was relieved to find out that I did not have leukemia and so we stopped my plaquenil and cellcept, but I still had to remain in the hospital to recover from the transfusion. I was hospitalized for a week and tests were run on me constantly. It was exhausting. I felt really bad for my boyfriend who would drive back and forth from his internship to stay and be by my side.

Finally, after I was released from the hospital, loaded with medicine I was unable to sleep due to the amount of steroids I was taking. I slowly recovered but soon after I fell ill again because I had been off of cellcept for too long. So even though cellcept might have caused my bone marrow function to not work properly, at the same time it was vital to my kidneys. That's life for ya. Now, I'm receiving treatment, running blood tests every week if I'm having a good week, and on top of daily meds, and treatment, am receiving procrit and neupogen shots when my blood levels aren't normal. The procrit and neupogen shots sting and have such side effects as backbone pain, dizziness, nausea, and etc. Because of the backbone pain I am now also on vicodin, which I actually really hate.

Everyday, I wake up and look at this strange person in the mirror and tell her she can do this even though she doesn't want to. It's hard...but I will not give up and I refuse to let Lupus break me. I will choose to love and respect myself much more than that. I CAN DO THIS.