I'm LupusPoopus - a name my children have given this crazy disease back in 2004.
I'm 33, married, with 2 kids, and I have Lupus Poopus aka SLE.
I clearly remember it was Friday, April 2 2004. The girls and I were getting ready to go out for our weekly dinner while Dean was at work. I felt like I got hit by a mack-truck and had a ‘control-type’ fall onto the bed. The next thing I knew, Dean was waking me up; it was after 10pm. Apparently the girls tried to wake me with no success so my oldest daughter took care of dinner and her little sister until Dean got home. (she was only 9 and I will forever feel guilty for doing that to her)
I had a hard time waking up and felt very *off*. I didn’t feel sick per say but something wasn’t right. The next morning, I woke up with paralyzing pain from my hips down through my legs. Something WAS wrong. At the hospital, they tested me for everything including a series of STDs with one battery of blood test after another but only one thing was certain; the doctor had a real concern tone that worried me.
I was given some heavier medication to help with the pain but I instantly started feeling worse and the room was spinning. Within minutes, the nurse told me it was time to go home and rest. She advised the results would arrive in a couple of days but the ANA would take two weeks.
Between the pain and the dizziness, I barely made it to the car and although the house was merely a few minutes away from the hospital, the ride home felt like hours. Dean helped me out of the car and I told him to run for a bucket…
The next few days were the same. I couldn’t walk, couldn’t do anything for myself and I was so tired. I felt so useless. But the worse was the medication which made me so sick. My doctor switched the prescription several times to no avail.
The words ANA played heavily in my head. Once I started to feel better, I researched ANA: Antinuclear Antibodies – When tested positive, it could be a sign of Lupus. Lupus? No idea what that was so of course I researched some more. Scared? Yeah you can say that! Especially reading that it is potentially fatal.
My ANA did come back positive which meant another series of tests and A LOT of appointments. I was immediately referred to a rheumatologist who explained I scored 7/11 out of the criteria. I received my diagnosis within a few weeks which was confirmed by three other doctors. They also confirmed that my Fibromyalgia from when I was 15 was a misdiagnosis and they should have tested me for Lupus then. GREAT!
I spent more time in the hospital that summer due to infections, pain, burning, swelling, rashes. I often felt like my hips were locked and I couldn’t move or walk. Needless to say, I learned more and more of the things I should avoid to prevent these flares. We moved to NB in November of the same year and although I continued to visit the hospital on a regular basis and still had many infections, my doctors weren’t convinced and didn’t treat me as a Lupus patient which became very frustrating. I no longer had prednisone or anti-inflammatory meds. Little by little, I got better but I was also more careful not to cause any flares. I still had pain every once in a while but nothing like it was in April/May of 2004.
Christmas shopping in 2004 was incredibly difficult to the point Dean would try to convince me to use the store scooters. No Way!
Fast forward to today. I'm back in Ontario since September. I have been having more pain in my hips and legs when I’m walking for a long period of time (ie. Visiting a museum) and I have to take stairs slowly. Any quick jerks and the pain starts to burn, either in the knee or hips. (And thanks to this forum, I now know that this could be caused by muscle weakness - will talk to dr.) I’ve also noticed some weight gain again. My skin is very itchy, I have spontaneous rashes, more headaches and masked migraines, I'm often lightheaded and dizzy, sores/blisters are appearing on my mouth, nose, face and arms, heart spasms, my cysts keep swelling, and my anxiety seems worse. Somehow, I didn’t put two and two together but when I told my doctor about everything that is going on lately, she nodded and said: “I think we should be sending you for blood work”.
She asked me series of questions all confirming that my remission might be over. She advised me on certain things to do to ease the current symptoms I am having and to try to keep another flare at bay.
I came home and cried in Dean’s arms. I’m so lucky to have his support. Over the past three days, the itchiness has been almost unbearable on my face, arms, chest and legs. Removing the creepy factor, my skin feels like a million ants crawling all over me with tiny tacks on their feet; especially on my face and shoulders.