Lupus: we are the CEOs of our bodies
Congressional District: CA32
Issues and Challenges
Juana Mata has encountered: Caregiving
I was diagnosed with Lupus 5/31/2009, but I now believe my symptoms started in 2004.
In August 2004 I had many symptoms. I had severe headaches, extreme fatigue, I did not know what was wrong with me. I thought I was stressed and fatigued because I was working full time and I had just returned to school to complete my bachelors degree.
In September 2004, I ended up in the ER because I could not breath. I had chest pain. I was diagnosed with hypothyroidism, my TSH was extremely high, I was given medication and after a few months I was better but the pains continued. I did not pay much attention to the pains, because I always had an excuse why I was feeling fatigued or with pain...until mid 2008.
In 2008 my symptoms increased. Extreme fatigue, severe headaches/ migraines, body aches, my fingers and wrists hurt. I thought it was carpal tunnel. After many appointments, no medication and no diagnosis, I opted to start looking for alternative medicine, from acupuncture, to cupping, to hydrotherapy and iridology. I felt nothing was helping.
After many appointments and lab tests, I was diagnosed with Rheumatoid arthritis in Feb. 2009. When I was diagnosed with RA I thought the world was going to end, I cried I couldn’t understand why I had RA at 39 I thought only older people had RA. My rheumatologist started me on medication, however the symptoms continued, extreme fatigue, severe headaches/ migraines, body aches, I started losing my hair, I had rashes on my fingers, my feet, my scalp and on my face, I also had severe blisters inside my nose and mouth. To the point that the mouth sores looked like open wounds. In April I had what is called the butterfly rash. Desperate, I continued to search for answers and continued alternative medicine, but I was not getting any answers as to how I was feeling.
May 31, 2009 after running 3 miles, spending time with my sister and children bowling, I knew in my heart something was wrong, the mouth sores were getting worst, I went to urgent care, talked to the doctor, showed him the mouth sores and I told him my symptoms, that I was scared - what if I had leukemia (I knew someone who had leukemia who had sores like mine)? The doctor said “ you look fine, you don’t look sick” I asked the doctor if he could order lab work because I was scared and did not want to go home unless I knew what was wrong with me. He sent me to get lab work, I asked if I was getting STAT lab but the lab technician said the labs were routine and I was not going to get the results until the following day. I went back to the doctor (urgent care, lab and ER are in the same building), talked to the nurse and asked him if I was going to be called in for the results. The nurse stated I would get a call the following day. I insisted and asked to speak to the doctor, because I wanted to get the lab work results the same day. After being diagnosed with anxiety disorder I was asked to go back to the lab to get more blood drawn but this time the labs were STATs. After 30 minutes of getting the blood drawn twice the nurse calls me into the doctor’s office not to an exam room but his office. The doctor looked at me and asked me if I was bleeding, he asked me to go to the restroom and checked if my urine had blood. I used the restroom and I was not bleeding.
My anxiety levels were rising, I asked him what was wrong with me, he looked at me and stated he needed to check with another specialist. I asked again what was wrong and he stated my platelets were low, I did not know much about platelets but I knew normal platelet count is over 130. The doctor then said to me “your platelets are at 6”, I felt my heart drop all I remember saying is “Am I going to die”, the doctor said to me I was going to be sent to ER. I was about to get up and walk to go to the ER, but I was told I could not walk. I had to be taken in a wheelchair.
I was admitted to the ER. I had blood drawn again, and my platelets dropped to 2. As I waited in the ER and not knowing what was wrong with me I felt numbed. I did not know what to think. The ER doctors plan was to give me a transfusion, my sister Estela was with me as we waited in the ER room, there was a shift change for the doctors. The incoming doctor checked all my labs and talked to my sister and I. My sister Estela asked him if I had lupus, since it looked like I had all the symptoms of lupus. He said yes. I could not get a blood transfusion because I had lupus and a transfusion would not help as my body was attacking itself. I was in ICU for 7 days and since my lupus diagnosis I have been in ICU 4 times.
Self advocacy is important, if I had not advocated for myself the day of my diagnosis and had instead left home like the doctor had said, I would not be here today. I respect doctors, they are the experts, but I have to say that we are the CEO of our bodies, we know our bodies better than anyone else. As patients we have a voice and work together with our doctors we can find answers to what our body is trying to tell us.
After my lupus diagnosis I did not know anything about lupus, I had never heard the word lupus, I was released from the hospital, but the medication and symptoms were not getting any better. I was feeling depressed not only for the condition, the side effects of the medication and knowing that there is no cure, and there were medications and I could die.
I started to loom knit, I was making bennies, scarfs, and on the weekends my family and I would get together (as always) but it was different as they started to loom knit with me and we started to talk and learn about my condition ( lupus).
As we searched for Lupus information there was not much information in English or Spanish. That is when my sisters and I saw the need not only to bring awareness about lupus in English and Spanish but also to bring support, not only to lupus patients but to their families and loved ones. We knew that a condition such as Lupus does not only affect only the patients but the family as a whole.
My sisters and I formed a nonprofit organization in 2011 Looms4lupus.org where our primary goal is to provide an environment for education and outreach to Lupus and Fibromyalgia survivors and their family members through multiple avenues such as hands on workshops, informational clinics, bilingual resources , and support groups for overall physical and mental health. As a patient advocate, I now have the opportunity to share my story to help and support others. I have had the opportunity to advocate locally and nationally.
Having lupus is not fun, but honestly the diagnosis has done more than bring weak, scary and painful moments in my life. Lupus has taught me strength, hope, a deeper appreciation of everything in my life. It has given me a purpose.
Lupus has also given me the opportunity to do many great things, to help others, to meet wonderful people.
Despite all the health struggles, Lupus has given me the courage to continue advocating for new medications and possibly a cure for Lupus. Not once have I questioned “Why Me” - I don’t know 'why me' but what I do know is that I am grateful for all that I am, for all that I have done, and for all the great things I will do to help, support and to remind lupus, fibromyalgia patients and their family that they are not alone. “Never Give In, Never Give Up , Never Let Go, Just Keep Fighting!”
My Motivation and Inspiration
Despite all the health struggles, Lupus has given me the courage to continue advocating for new medications and possibly a cure for Lupus. Not once have I questioned “Why Me”, I don’t know why me but what I do know is that I am grateful for all that I am for all that I have done and for all the great things I will do to help, support and to remind lupus, fibromyalgia patients and their family that they are not alone. “Never Give In, Never Give Up , Never Let Go, Just Keep Fighting!”