I have probably been experiencing Lupus symptoms since I was 17 years old. I thought I was having a heart attack. Lucky for me, I was working at a hospital as a ward clerk at the time. I was having chest pains and asked the nurse I was working with if I was too young to have a heart attack. She sent me to the emergency room for an EKG. Verdict - my heart was fine.
Over the years, I'd had bouts of fatigue and exhaustion, but chalked it up to being anemic. I was someone who LOVED basking in the sun, and figured that the butterfly shaped rash on my face was just part of my tan. It wasn't until 1990 when my twin babies were 2 years old, that I had to seriously consider there was something more than anemia going on with my body.
Part of my hesitation to go to the doctor was that I kept telling myself that I was overreacting to my symptoms. My mom was a nurse, so it was easy to start thinking that it could be something really serious, like cancer. So when I was feeling bad, I would just try to push through it. What finally made me seek a diagnosis was that besides the chest pains, joint pain and fatigue was that I was literally falling asleep in the middle of the day while taking care of my children. I would be reading the girls a story and would not be able to keep my eyes open.
Once I finally went to the doctor, it took 9 months to get a positive answer. Heart disease and rheumatoid arthritis were the first things ruled out.That was a big relief, but I started to get discouraged because my doctor couldn't tell me what was wrong. Was it chronic fatigue syndrome? No. Cancer? No. As odd as it might sound, by the time my doctor told me that I had SLE, it was a big relief. There was part of me that had started to think that maybe I was just a hypochondriac and making it all up! I actually had something wrong with me! Yay!
Uh, yay? Well, at least I wasn't crazy, right?
Here are some common symptoms of Lupus (which I got from the Lupus Foundation of America). I indicate with "yes" or "no" whether I have each particular symptom:
1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly - yes.
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches - no.
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse - yes.
4. Oral ulcers – sores appearing in the mouth - yes.
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed - a big yes!
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis) - yes.
7. Kidney disorder – persistent protein or cellular casts in the urine - no.
8. Neurological disorder – seizures or psychosis - no.
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count) - yes.
10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies - I don't know.
11. Abnormal antinuclear antibody (ANA) - yes.
12. Hair loss - yes.
What I have is considered mild to moderate SLE and apparently that makes me the ideal candidate for the new medication, Benlysta.
Part of my hesitation to go to the doctor was that I kept telling myself that I was overreacting to my symptoms. My mom was a nurse, so it was easy to start thinking that it could be something really serious, like cancer. So when I was feeling bad, I would just try to push through it. What finally made me seek a diagnosis was that besides the chest pains, joint pain and fatigue was that I was literally falling asleep in the middle of the day while taking care of my children. I would be reading the girls a story and would not be able to keep my eyes open.
Once I finally went to the doctor, it took 9 months to get a positive answer. Heart disease and rheumatoid arthritis were the first things ruled out.That was a big relief, but I started to get discouraged because my doctor couldn't tell me what was wrong. Was it chronic fatigue syndrome? No. Cancer? No. As odd as it might sound, by the time my doctor told me that I had SLE, it was a big relief. There was part of me that had started to think that maybe I was just a hypochondriac and making it all up! I actually had something wrong with me! Yay!
Uh, yay? Well, at least I wasn't crazy, right?
Here are some common symptoms of Lupus (which I got from the Lupus Foundation of America). I indicate with "yes" or "no" whether I have each particular symptom:
1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly - yes.
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches - no.
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse - yes.
4. Oral ulcers – sores appearing in the mouth - yes.
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed - a big yes!
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis) - yes.
7. Kidney disorder – persistent protein or cellular casts in the urine - no.
8. Neurological disorder – seizures or psychosis - no.
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count) - yes.
10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies - I don't know.
11. Abnormal antinuclear antibody (ANA) - yes.
12. Hair loss - yes.
What I have is considered mild to moderate SLE and apparently that makes me the ideal candidate for the new medication, Benlysta.
