|Teens With Lupus||
I had the urge to write this all up the other day. Its long and I'm sure has errors, but I'm glad I wrote it out. I'm also not sure how to blog.
I have always had what was thought of as minor health issues. I always had aches and pains and they were always thought to be “growing pains” or something along those lines. At about 13 I started to notice a change in my toes. They started to feel numb and I could see that they looked drained of color. It was a little uncomfortable but I tried to ignore it. After awhile though they started turning purple and would be so cold. I would walk around on my “tippy toes” trying to get feeling back in them. I didn’t know what was going on and it seemed to be getting worse so I went to see my pediatrician who told me I had Raynaud’s and that I just needed to keep myself warm and that would make it better. I started to dress in warm clothing all the time and it wasn’t getting better. It started to creep into my fingers and after many months it was so bad I went back to my doctor to ask if there was anything else I could do. He noticed what I thought were “weird holes” on the tips of my fingers and said he wanted me to see a Rheumatologist at Children’s Hospital. I wasn’t really that concerned because I had no idea that there were diseases associated with Raynaud’s. I had to wait months for my appointment and the closer it got I decided to look on the internet and found that there were many diseases that were associated with Raynaud’s and I started to get scared. I came home from school one day and told my mom what I had found out online and we both said that many of these diseases had symptoms that I had for years but didn’t realize they could be symptoms of any disease. I actually said to my mom the day before my appointment “mom I don’t want it to be lupus. That sounds like a bad one.” And as strange as this may be my mom got a call from the Lupus Foundation asking if we had any clothes they could pick up. She said that it must have just been one of those weird signs that life sends us sometimes.
A month after my first Rheumatologist appointment I called to get the blood results and I knew that there must have been something when they said well we shouldn’t really talk about this over the phone your doctor wants to see you. So they got me in within days to come in. They told me that I had a lot of abnormal test results and that they thought I had lupus. I didn’t know what to think, I had read horror stories online before even going in. Organ failure, short life span, death. I had just turned 16. My doctor started talking about how I shouldn’t get pregnant and if I did I would have to plan for it. I was only 16. I felt so overwhelmed. Based on all the things I told her were going on she sent me for more tests, including a chest x-ray. The memory I have of that day that stands out the most, is trying not to cry while texting my boyfriend of the time about how I might not be able to have kids while sitting in a waiting room at the hospital. Of everything she said that was the most devastating. I have 6 brothers and sisters, and always imagined the same big family for myself.
She put me on Norvasc and Plaquenil and told me to start taking a baby aspirin every day. I was the type of person who usually didn’t take a pill for a headache, and suddenly I was taking 5 every day. I was told to make an appointment for a few months away unless anything happened between then and my next appointment. Well all the sudden I started swelling and actually having pain in my joints, especially in my hands. She put me on Prednisone. I felt like other than being really tired with occasional pain I had been mostly fine and suddenly I was falling apart within a matter of 6-8 months. I couldn’t go to the pool that summer, and when I did I couldn’t stay in the pool because no matter how nice it felt to everyone else, it was always too cold for my fingers and
I was up and down for awhile and then seemingly out of nowhere I started getting really sick at the end of my senior year. I kept complaining about how badly my feet hurt. They were so swollen I could barely wear any of my shoes, and none of them were comfortable. I went in to see my doctor and had several blood tests run over the course of a few weeks. She had started me on Prednisone again, 30mg. She told me to come back in a week and we would see how I was doing. I was just getting worse and was getting no relief. She accused me of not taking the Prednisone ( I had not taken my medications in the past) and I was so upset and with my moms support convinced her I had been taking the medicine. They realized I wasn’t metabolizing the Prednisone and had to switch me to Medrol. By this time I had gotten pretty sick. The vasculitis in my legs had made it almost impossible to walk. I was miserable. They had me on a high dose of oral steroids and then it was decided I needed a three day round of IV steroids to try to get things under control. I had a really bad reaction though; every possible side effect hit me. I was almost more miserable then than I had been previously. They kept saying my blood work was looking better, but I didn’t feel better at all. It took weeks to get to the point that I could walk again and make it too school. I feel like I missed out on so much of the end of my senior year and it is filled with bad memories, not happy ones.
I have been diagnosed with Lupus, Vasculitis, Myositis, GERD, Interstial Lung Disease, Raynauds, Sjogrens, and fibromyalgia. I am 19 years old now and I will be starting my third year of college as a pre-med student. It has been a very difficult journey, but I have come through it. I want others to know that no matter what happens there is always a way to over come the obstacles life often throws at us.
I was diagnosed with lupus four years ago when I was 16. It has been a rough few years but while I have lupus it doesn't have me!