I am Grace Corpuz Ragusante. I am a nurse and I have Lupus. And I need help.
Yes I am a nurse, and suffering from Lupus. I am a nurse since 2010 and been encountering different kinds of serious diseases from my profession. And I didn't expect that I would experience one. Unfortunately, it was Lupus.
It all started by August 2016 when I got a flattened, patchy and non-itchy rashes on my face. At first, I just ignored it however it continued to spread like a butterfly wings. I tried to have facials and put some corticosteroids cream yet those failed. So I decided to consult a dermatologist.
The dermatologist adviced me to use another type of corticosteroids and prescribed me an anti-histamine for a week. She said it was an Urticaria, a type of skin rash that is due to an irritant. I followed the said prescription and noticed that nothing happened.
While I am doing my responsibilities at the hospital, doctors and my colleagues kept on asking me if what were those rashes on my face. Some doctors told me that it might be a Cellulitis, an infection in the skin that needs urgent consultation. These comments bothered me a lot.
One duty, I tried to ask one of our prestigious doctors if he can recognize what kind of rashes i have. I asked him if it was a butterfly rash that is common sign of Systemic Lupus Erythematous (SLE) or known as Lupus. He assessed my rashes and doubt that it was a Lupus rash. He asked me if I consulted it to a dermatologist and I said "Yes." He adviced me to consult another dermatologist for a second opinion. I was nervous.
I and my boyfriend went to a well-known hospital in the metro for dermatologist consultation. I was stressed. I kept on praying that this rash was just a simple rash. I prayed that it was nbot a serious condition.
We've consulted to a dermatologist-pathologist doctor. He assessed me if these rashes were rashes of Leprosy or Tuberculosis. Happily it was not. However, she told us that it might be a Lupus rash. I was shocked and afraid. She asked me to do some diagnostic exams. She told me that if those exams would result positive, I should consult a rheumatologist immediately.
I did all the diagnostics such as complete blood count (CBC) , creatinine and ANA. I was so scared about the results. I prayed a lot. Praying that the results would be negative. Unluckily, the result of my exams were positive. My white blood cells which is responsible for immune system results low and I got a positive ANA.
I cried. I cried a lot at the chapel of the hospital. My boyfriend kept on boosting my spirit. I was so frigthened, confused and hopeless.
We've consulted to a rheumatologist recommended by my doctor friend. She asked me what were the signs and symptoms that I was experiencing. I told her that besides my rashes, I experience hair loss and I have painless mouth sores. She asked me if I experience any joint pains and photosensitivity, I answered "No." She explained to me that those symptoms are signs of Lupus. However, I didn't met the 4 criterion so that she can diagnose me with Lupus. So she asked me to do the confirmatory test for Lupus which is the Anti-Smith.
After the consultation, I felt hopeless. I felt that all of my future plans would remain as plans alone. I felt that I wouldn't fulfill my dreams anymore.
I did the confirmatory test. Again, it was positive. I cried. I was so hopeless. I felt that I would live shorter. I felt that I would die young. I was so afraid for my parents and for my love. I was so confused and I don't know what to do.
We've consulted again to rheumatologist. Finally, she diagnosed me with Lupus and asked me to move on. It was so hard for me to accept this. I have so many questions on my mind yet I was so afraid to inquire.
She told me about my disease. That Lupus is an autoimmune disease that was no cure yet it can be controlled. She said that I will experience joint pains, photosensitivity, hair loss and exhaustion that will affect my immune system that will make me immunocompromised. Therefore, she adviced me to prevent stress and to prevent exposure from communicable diseases. She also told me to prevent sunlight also because it may cause lupus rashes.
She started steroids, anti-malarials and calcium as my medications. I didn't expect that I would have maintenance medications at my early age. I thought I was healthy since I was chubby before. I believed that I was strong because I can work on a 16-hours of duty with 22 patients in my ward. But I was wrong. My body has its limit.
So I decided to have a work leave. I was hard-headed. I didn't took rest. Still I tried to study for international exam for nurses because I believe I can. One day, I was going to the metro for some reasons. I ride the light railway transit (LRT) early in the morning. Suddenly, I felt dizzy and made myself sit on the floor. My fellow commuters helped me to get a sit. As I arrived, a wheelchair was awaiting for me.
It was a sign that my body was giving up. Thereafter, I experienced continuous coughing, difficulty of breathing, chest pain, high grade fever, persistent vomiting and loss of appetite.
Then I was admitted. Not once, not twice but three consecutive admissions. I was admitted for a month and celebrated Christmas at the hospital. During my admissions, I received high dosage of antibiotics, I had several diagnostic exams, and I had few blood transfusions.
I was too weak. I suffered from major depression. There was a time that I can't even stand and step to stairs alone. I was so prone to accidents. I loss my appetite that made me too slim. I got 51kg from 74kg weight. I can't grip or grasp things because of my joint pains. And my skin got darker.
With my admissions, my family got financially challenged. At some point, I wasn't received my medications due to lack of money. My boyfriend and my dad asked help to their friends and relatives in able to fulfill my medical needs. My boyfriend also sacrificed his belongings just to help me.
I am so lucky to have my boyfriend and my dad too. They fully support me and never gave up on me. I am so lucky to have friends who helped me without asking in return. I am so lucky that I am still alive.
Right now, I don't know exactly what will my life will be. It is really hard to manage this disease. Maybe this is the result of abusing my body. I can't work stressfully. I am weak.
I need help. Physically. Sorry if there will be times that I do need to lie on bed instead of going out with you. Sorry if in the last minute that I cancelled our game. Sorry if sometimes you are irritated on me because of special treatments.
Emotionally. I should avoid stressful situations. I should be strong. I need emotional support whenever I am down. I need someone who can understand and can listen on my problems.
Spiritually. Lupus has no cure. You can only control it. I need prayers. Your prayers will make me stronger.
Financially. I am sorry if I message you for financial help. I admit it, I am financially challenge because I am on leave from work. My parents can't support me all the times because they have problems which I can't mention that they are facing through. I need help for my medications everyday and check ups every month.
Here's my story. Nowadays, I am trying to get better. I am trying to eat greens and fruits everyday. I am trying to return myself. I am trying to be stronger person. I am hoping that I can recover soon. So that I can be back on what I used to do. I miss those.
My life is a Big "THANK YOU." A gratitude to those people who helped me in all the struggles I went through.
Again, you know yourselves, THANK YOU!!! 😭😭😭 God bless us all!!! 🙏🏻🙏🏻🙏🏻
*I posted this because I want to share what am I going through, to make people aware of what Lupus is and to make myself stronger 💪🏻.
Your small help is a big thing for me! 😭😭😭
GRACE C. RAGUSANTE