My Name is Nicole and this is my story
As long as I can remember I was always getting sick. And not just a cold here and there but very sick. If there was something out there to catch I would be the first one to get it and I would get it the worst and the longest.
I started to miss a lot of school and started to get really tired, more often than normal. My parents thought I was just being a
lazy teenager who didn’t want to get up for school. No one believed me when I told them I truly was in pain and my body just couldn’t function. Even my friends started to get mad at me saying I make up excuses or milking it. It was very hurtful for no one to believe me.
But one day my junior year of high school me and my friends were coming back from lunch and in the middle of the hall way I froze. I had a horrible shot of pain go through my entire body and couldn’t move my legs. My parents had to pick me up and take me to the ER. They ran every test they possible could and everything came up negative until they took a spinal tap.They found out I had spinal meningitis.
Although relieved I found out what was causing all of my pain, the recovery was very painful. After I recovered in 2 months I thought my life would return back to normal and I would feel so much better. And yet I continued to get sick, and was always fatigued no matter how hard I tried to stay healthy. I began getting strep 3 to 4 times a month. My mom started to realize I was losing a lot of hair and she knew something wasn’t right.
By that time my mom started to believe that something was wrong with me even though the doctors said they ran every test on me when I was back in the hospital. I didn’t believe them and I needed to know. So I took it upon myself to start doing research on my symptoms. I googled them (yes Google, it comes in handy very much) and to my surprise I found my answer.
I found I had all the symptoms of lupus. Lupus is a long term autoimmune disease that attacks your organs and can affect your skin, joints,kidney and brain. The symptoms include: weight loss, weight gain, fatigue,fever, hair loss, chest pain, and arthritis in your fingers, hands, wrists and knees, and skin rash usually known as the “butterfly” that covers the cheeks and bridge of the nose affects about half of people with lupus. You must have 4 out of the 11 typical signs to even be considered qualified to be tested for lupus.
And because I did have enough symptoms I went to my doctor and got an ANA test done which detects antinuclear antibodies in your blood. Your immune system normally makes antibodies to help fight infection. In contrast, antinuclear antibodies often attack your body’s own tissues, specially targeting each cell’s nucleus. After I got tested of course it came back positive with no surprise to me. My doctor told me I have SLE ( systemic lupus erythematosus) and referred me to a rheumatologist and after meeting with her and telling her my story she knew right away that I had lupus. She put me on hydroxychloroquine which is a medicine to help the arthritis and skin rashes. She has been amazing to me because she understands what I’ve been going through for almost all my life.
When I finally found out what was wrong with me a huge burden was lifted off my shoulders. I finally knew I wasn’t crazy and there was something seriously wrong with me. I got to prove to my parents that I wasn’t lying and wasn’t just being a lazy teenager and I was sick. I’ve had to make huge life changing styles to my life and I’m learning to deal with them day by day. I can’t push my body like I used to or I’ll get sick very easily and for a very long time. Some friends started to understand and some didn’t. I’m thankful for the support I do have in my life so much.
What scares me the most is that I’m a 22 year old living in a 70 years old's body and it’s scary to think about that it’s only going
to get worse. I wake up some days not being able to move my hands and wrists at all, the feeling like they are broken. I just have to fight though the pain and have faith in God that he knows I have the strength to live with this disease.
There is a lupus organization called http://www.lupus.org/newsite/index.html. It has groups of people to talk to about what
you’re going through because no one knows what it’s like until they have been in my shoes. It's nice to be able
to talk to someone and also hear their story and to know I'm not alone with this.
I used to take life for granted, but I’ve learned each day is precious and I’m going to fight as hard as I can and make every day worth living with a smile on my face!
I started to miss a lot of school and started to get really tired, more often than normal. My parents thought I was just being a
lazy teenager who didn’t want to get up for school. No one believed me when I told them I truly was in pain and my body just couldn’t function. Even my friends started to get mad at me saying I make up excuses or milking it. It was very hurtful for no one to believe me.
But one day my junior year of high school me and my friends were coming back from lunch and in the middle of the hall way I froze. I had a horrible shot of pain go through my entire body and couldn’t move my legs. My parents had to pick me up and take me to the ER. They ran every test they possible could and everything came up negative until they took a spinal tap.They found out I had spinal meningitis.
Although relieved I found out what was causing all of my pain, the recovery was very painful. After I recovered in 2 months I thought my life would return back to normal and I would feel so much better. And yet I continued to get sick, and was always fatigued no matter how hard I tried to stay healthy. I began getting strep 3 to 4 times a month. My mom started to realize I was losing a lot of hair and she knew something wasn’t right.
By that time my mom started to believe that something was wrong with me even though the doctors said they ran every test on me when I was back in the hospital. I didn’t believe them and I needed to know. So I took it upon myself to start doing research on my symptoms. I googled them (yes Google, it comes in handy very much) and to my surprise I found my answer.
I found I had all the symptoms of lupus. Lupus is a long term autoimmune disease that attacks your organs and can affect your skin, joints,kidney and brain. The symptoms include: weight loss, weight gain, fatigue,fever, hair loss, chest pain, and arthritis in your fingers, hands, wrists and knees, and skin rash usually known as the “butterfly” that covers the cheeks and bridge of the nose affects about half of people with lupus. You must have 4 out of the 11 typical signs to even be considered qualified to be tested for lupus.
And because I did have enough symptoms I went to my doctor and got an ANA test done which detects antinuclear antibodies in your blood. Your immune system normally makes antibodies to help fight infection. In contrast, antinuclear antibodies often attack your body’s own tissues, specially targeting each cell’s nucleus. After I got tested of course it came back positive with no surprise to me. My doctor told me I have SLE ( systemic lupus erythematosus) and referred me to a rheumatologist and after meeting with her and telling her my story she knew right away that I had lupus. She put me on hydroxychloroquine which is a medicine to help the arthritis and skin rashes. She has been amazing to me because she understands what I’ve been going through for almost all my life.
When I finally found out what was wrong with me a huge burden was lifted off my shoulders. I finally knew I wasn’t crazy and there was something seriously wrong with me. I got to prove to my parents that I wasn’t lying and wasn’t just being a lazy teenager and I was sick. I’ve had to make huge life changing styles to my life and I’m learning to deal with them day by day. I can’t push my body like I used to or I’ll get sick very easily and for a very long time. Some friends started to understand and some didn’t. I’m thankful for the support I do have in my life so much.
What scares me the most is that I’m a 22 year old living in a 70 years old's body and it’s scary to think about that it’s only going
to get worse. I wake up some days not being able to move my hands and wrists at all, the feeling like they are broken. I just have to fight though the pain and have faith in God that he knows I have the strength to live with this disease.
There is a lupus organization called http://www.lupus.org/newsite/index.html. It has groups of people to talk to about what
you’re going through because no one knows what it’s like until they have been in my shoes. It's nice to be able
to talk to someone and also hear their story and to know I'm not alone with this.
I used to take life for granted, but I’ve learned each day is precious and I’m going to fight as hard as I can and make every day worth living with a smile on my face!