When I was younger, I was sick often. My doctors attributed it to my asthma, but I still had strange symptoms, not typical with just asthma. For example, beginning at the age of 9, I developed sores in my mouth and nose that would happen every few weeks or so, severe arm and leg pains and strange fevers that could not be explained. Years ago all of the pieces finally came together when I was diagnosed with Systemic Lupus, shortly after a car accident that put my body through severe trauma.
The accident caused fractures to my pelvic bone, wrist, elbow, I had a head injury and broke my floater ribs on the right side. This led to my liver being split into four pieces, making me bleed internally. This was the first part of my fight, as the Trauma Surgeon did not think I would live until the morning. My doctors believe that the physical trauma the accident put on my body made the Lupus come out quicker than it might have on its own. I was sick way before the accident, but the accident just added stress onto an already stressed body and immune system.
A few months after the accident I had a small stroke, rashes, constant fevers and mouth and nose sores. I also began to get fatigued very often and experienced pain in my legs and arms. I consider myself - I was diagnosed with Lupus very quickly. Sometimes, it can take years.
Lupus has completely turned my life plans around, and after some time, I have finally come to terms with that. I attended college for 7 years, with a 4.0 GPA. This was something I was very proud of. I received an A.A. in Interior Architecture and then went on to do three years as a Chemistry major. I really wanted to go into the medical field because I loved to help people. This prepared me for the RN program that I entered into in 2004.
My dream was to go to medical school, but as I watched my health continually decline I thought going to Nursing school would give me just as much of an opportunity to help people without having to commit to a long medical program that I wouldnt be able to finish. During the summer of 2005, just before graduation, my Lupus took a turn for the worst. I was hospitalized 8 times over the next year. I was having severe anemia, small blood clots, fevers, problems with my potassium that affected my heartbeat, low blood pressure (85/45), muscle atrophy and severe weight loss. One flare up/hospital visit was the worst – my weight had fallen to 88 pounds and it seemed that every system in my body was going haywire. I could not walk or take care of myself. I could not feed myself or go to the bathroom on my own. It was an eye opening experience to say the least and really made me appreciate the smallest thing.
Three months of physical therapy and a home nurse helped me back to a somewhat stable point. That was my lowest point ever with Lupus. My life is finally getting back to “normal”. I have great doctors and a wonderful support system. My family has been a tremendous help in my life. Even with all the medicine I take, I lead somewhat of a normal life, only I have to take naps alot, can not go anywhere near the sun and I have to be careful about what I eat. Changing my diet has helped me enourmously. Alot of people don’t understand why Lupus patients sleep so much. It’s not that I want to take a nap every single day, its that I NEED to…when I don’t nap, my fever gets worse by the evening and I pay for it the next day with a fever of 100 degrees or higher all day long and extreme fatigue. As a Lupus patient, you learn what makes you better or worse - and I know naps are one of the most important factors in keeping me on a healthy path.
Lupus can be a very hard disease to understand and deal with, especially for those that are healthy. Educate yourself and don’t put too much pressure on the person who has the disease. Questions like, “Why are you still sleeping” and ” Just push yourself a little bit”, along with the infamous “But you look great, so there is no way you are really sick,” do not make us feel any better. In fact, they actually make us feel worse. It is also very difficult sometimes for a Lupus patient to make plans too far in advance. Personally, I have experienced too many times going out with people because of plans I had made earlier and then having to sit through the night burning up with fever and not being able to participate like I wanted to. I now only make plans on the same day or sometimes one day in advance. A Lupus patient knows his or her body and what is best for it. I am hoping that this site I designed educates people out there and helps them understand what it is like in the day of the life of a Lupus patient.
At this point, after years of ups and downs, my body is going through a somewhat stable phase – it is during these momentary peaceful times that I try to do and enjoy all of the things I cant do when I am in a flare. There are so many things I want to do, but have been held back because of being sick or being in the hospital. Lupus is a disease that affects one emotional, physically and spiritually. It makes you reexamine what is important to you in life, what yur priorities should be and it makes you take a good look within yourself and forces you to find out what your truly made up of.
My goal now is to educate. I am in the process of writing a book, I write part-time from my home office when I feel up to it and I was recently granted a seat on the Board of Directors for the S.E. Chapter of the Lupus Foundation of America (which I am so excited about!). Lupus has taken me on different road than what I had originally planned for my life, but I believe this is where I am supposed to be.
I look forward to the day when there is a cure for this disease. I look forward to a day without fevers & pain, a time when a week can go by and I didn’t have to go see one of my five specialists and a day where I can go out with my family all day long because I won’t need to nap two or three times. And I look forward to the time when I don’t have to be constantly looking over my shoulder at where I am going and if I am going to be around someone who is sick. (Lupus patients catch infections much easier than healthy people, and the immunosuppressants they are on make this even worse).
Nothing surprises me anymore in life – but I know that with the support of my friends and family, I can get through anything. It’s also necessary to have a sense of humor with this disease, otherwise I don’t know how people would handle it all the time!
I am very thankful for the help of God, my family and my friends during the rough times! You guys are awesome! XOXO Marisa
{ 2 comments… read them below or add one }
hi marissa,
i am a lupus sister, an author & writer, and live in ft. lauderdale!! i was diagnosed 23 yrs ago. i managed to have a child, despite all the naysayers. she just graduated from college. i would LOVE to meet with you –i’ll come to you.
bless you for your good work,
katie
Your story has lifted my spirits and I will refer my family to this website. I was diagnosed with Sjogrens syndrome a few years ago but I was just diagnosed with lupus last week. I have been living in constant pain for four years and even had to quit my job. I feel diagnosis and knowledge is the beginning of my road to recovery and acceptance. Thank you for sharing your information.