The holidays came and went and as we moved into 2009 we made several trips back to the emergency room. Patricia at this point had very high levels of yeast, protein and blood in her urine and she was treated for a UTI. She then had a violent reaction to something and came out in a rash all over her body. They thought at first she had scarlet fever but although we were never given a definitive answer, they told us they were sure it was a reaction to the antibiotics she had been given for the UTI. I was beside myself. Why couldn’t anyone tell us what was wrong with our baby girl?
What do you do as a parent when you think you have asked all the right questions, even given suggestion as to what you may think it is and you still don’t get a solution to the problem? I was at a loss and felt so helpless. As a Mum, all you want to do is take your child’s pain and suffering away and make everything OK again. The frustration I felt at not being able to do that was immense.
It was bad, really bad. Patricia woke up and couldn’t move. All her joints were swollen. She couldn’t close her hands, her knees and ankles hurt and she could hardly walk. Off we went again to the emergency room. This time the emergency room doctor was one of the faculty from NYMC and I knew him. He was concerned enough to have Patricia admitted to the pediatric hospital in Valhalla to conduct some additional tests. Of course I stayed with her. Doctors came and went. She was taken for a CT Scan, blood tests, on and on. We were there for 4 days. There was a lot of mutterings, musings and thoughts from the doctors, but still nothing firm. One doctor however had mentioned that she wanted to run some very specific tests but the tests would take a while to get back and we would not have a diagnosis straight away. What did she think it was? She responded by saying that it was highly unlikely but she wanted to rule out Lupus. OK, Lupus? I had heard of it but I had no idea what it was.
Patricia went home, weak and still feeling lousy. She went back to school and put on a brave face. We had received a notification from the school that she was in jeopardy of not being able to graduate in June because of all the absences she had accumulated. Luckily, her assistant principle was very understanding and that issue was resolved. We received a phone call from Dr. Chao’s, office, the pediatric rheumatologist who had ordered the tests and she confirmed our worst fears…”Yes, Patricia has Lupus”.
How can that be? My husband cried. I was in shock. I didn’t really understand what Lupus was. All I knew was what my husband had told me having had a few friends over the years that had had Lupus and believe me, it wasn’t good.
OK, take a moment and breathe. I am a strong believer that everything happens for a reason even when we are not quite sure as to what the reason is. I had my faith and all I kept saying was that God never gives us more than we can handle. And then it kicked in. I had to protect my daughter any way I could and to me that meant learning everything I could about Lupus. Talking to the doctor was the first order of business and finding out Patricia’s options. At least now we had a diagnosis and we could start from there. The treatment phase would begin and I would learn things about Lupus, my daughter and myself as we navigated though unknown territory.Hug your children no matter how old they are and remember life can change in an instant. Until next time, love and blessings to you all.