My name for short is Ali, and my lupus was diagnosed in 1996. At that time,I was having seizures and joint pain. I was told it would not progress any further than that. One year later, I had a stroke, losing my left visual field.
I switched my doctor, who also said my lupus would be mild. I continued to have seizures and was also diagnosed as having Anti-Phospholipid Antibody syndrome. Being a young girl, I didnít know what that meant. I just continued on my Coumadin and seizure meds and tried to forget it.
As the years progressed, so did my lupus. I got married, purchased my first house, and after one year in it, my lupus flared again. I started to get severe cramping in my arms and legs. It was found that I had several DVT`s in both arms that I was unaware of.
Because of my extensive history, the vascular surgeon advised it best to not place a filter in my body. I took his advice only to find myself in the worst situation of all. One spring morning I fell ill. I stayed that way for several days until the cramping in my arms and legs was so severe I went into the hospital.
I had a gastric bleed. This is how I came to know that the cramps were a signal of bad things to come. Right after that occurrence, I went into renal failure. My platelets dropped so low that I could not have a biopsy. I was told I had some sort of micro-angiopathy and my body was making small clots in my organs.
When I finally had my biopsy after two months in the hospital, I was diagnosed with a class IV lupus lesion in the kidneys. I started Cytoxan treatments and continued them for several months. Because of the renal failure (which was stage 4) I could not have full doses of the medication, and eventually had to stop. I was told dialysis was going to happen. I lost 100lbs, leaving me frail and very thin.
My husband and I decided that a vacation was due. We booked a trip to Aruba. I started to have headaches, but thought they were from stress. Working full time, running an insurance agency, being a wife, the doctors, hospitals, chemotherapy etc. was starting to get to me. The headaches did not go away. The day we were supposed to leave for our dream vacation, I was admitted to the hospital. I had a severe brain bleed. I was induced into a coma, and awoke paralyzed on my right side.
Time progressed, and with several months in the hospital and rehab, I came home and went back to work. I tried to live normally although the thought of another bleed never left my mind. We finally went on our dream vacation one year later in 2009. I had a great time.
However, I came home to yet another bleed in my head and another few months in the hospital. I was soon was diagnosed with avascular necrosis, although I thought my limp was because of the strokes. My hip had collapsed, and I had a total hip replacement.
I was nervous about that surgery because one year prior, I had a dialysis catheter placed in my abdomen. The surgery was not successful and after a few months in ICU, it failed. No dialysis access for me. Fortunately, my hip surgery went well. I recovered to learn that I have it in my left hip as well. Let`s knock on wood that that one hasnít collapsed yet.
This past September, I finally stopped working. I became very ill with Pancreatitis and during my hospital stay, I had yet another bleed in my head. I was admitted into the hospital in November of 2009 and was there until January. When I finally became coherent, I was told I also had Lupus Cerebritis.
My entire short term memory was wiped. I swept myself off, got out of there, and went on with life. My marriage was on the line, and I didnít want to lose my husband, my house and everything I had worked so hard for. Right now, my kidneys are hanging on by a thread. I still get headaches, and have had several doses of Rituxan, another type of chemotherapy.
My husband and I are going strong. I know that my lupus will never be in remission, and because it has also affected my eyes, brain, kidneys, and other organs, I have decided to donate my body to science with my passing.
My husbandís motorcycle friends, the Forsaken Guns, have decided to raise money for this awful disease. We are also going to Aruba again. I want everyone to know that hope is what you need. Every time I thought that death was coming for me, hope led me out.
Love to everyone, I hope my story is helpful to someone else. Thank you for letting me share it.