I am a 52-year-old single African- American mom currently battling fibromyalgia and adjusting to disabling NPSLE -neuropsychiatric systemic lupus in a severe form involving central nervous system complicated by APS(antiphospholipid syndrome) that leads to chronic DVTs (blood clots). Here’s my Lupus Survivor Story.
Having given up ambitions of a career in medicine and biomedical research to live on disability benefits, I was really excited to be in remission and starting a new job in June 2004. My dreams were deferred again by a very sudden and aggressive attack with hemolytic anemia reducing my blood cell counts to 10% and shutting down my pancreas and liver. I narrowly escaped death. I contribute my survival to my faith in God and his grace to allow me to live in order to raise my teenage son, who had no one but me.
Once the crisis was over, I was completely paralyzed by atrophied muscle from weeks of immobility in the hospital bed. Once home I quickly rid myself of the walker and potty feeling euphoric from the high doses of IV steroids. Before the completion of a 6-month course of chemotherapy Cytoxin, I developed shingles in two quadrants of my face and relentless neuropathic pain. The side-effect of swollen feet kept me out of shoes for months and caused DVTs in both legs to be dangerously overlooked. A Greenfield filter was implanted to reduce the potential of blood clots traveling silently upstream causing pulmonary embolism, stroke or death. Before I could rid myself of the home nurse and port-a-cath, I was back in ICU with life-threatening septicemia, a systemic infection of my blood that’s often the cause of death for lupus and cancer patients.
But I didn’t let that stop me. In my bedridden state, I went on to enroll in an online Web Development Certification program in Computer Information Systems. Before the 1-year program was over I began to develop severe and unusual neurological symptoms which plagued me with seizures and left me mute and unable to write. When I did speak it was complete gibberish, baby talk, or in a “West Indian” accent. I’m not West Indian! I developed paralyzing problems with short-term memory, concentration, and attention. Fortunately, I was always able to type on the keyboard, so despite my adult onset ADHD and dyslexia, I managed to make it through my courses.
By the time I had progressed in compensating for these neurological deficits and began tapering off the heavy duty lupus meds, I found out the chronic UTIs and flank pain was due to a golf-ball size kidney stone! Well, they decided to cancel the lathroscopic surgery for less invasive lipotripsy. Having sonic blast with no scalpel sounded good, but because of the size and hardness, the first blast just left me with 3 big stones instead of 1 huge one. These procedures went on for 6 months and because my Coumadin (blood thinner) wasn’t managed well, (Stopping and starting without heparin bridge), I developed a few DVTs on top of everything else.
It was during this chaotic time that I turned to the internet for information and support. Initially, I created a website with general information to share with friends and family. Next a blog which led me to meet other lupies. In about 2008 I created a Ning social site as a hub for fellow lupus bloggers to share and support. Just as I was getting that off the ground, I encountered another health crisis. Late one night after an ordinary, pretty good day, I had a sudden attack of pain so intense that I could not get off the bathroom floor. My dutiful son called 911. After a painful wait in the ER and several scans, I was told I needed emergency surgery for a ruptured colon. When I awoke I was so elated the pain was gone and happy to see my father and son by my side. I remember we even took pictures. It was quite some time before I became aware of this plastic bag attached on the left side of my abdomen. That wasn’t so bad as this gaping split through my navel down the center of my stomach exposing a few layers of my flesh with only a large piece of gauze laying across, not even taped.
Without ever having any previous GI problems other than constipation from pain meds, I was totally unprepared for the reality of having a colostomy bag. I was devastated. The trauma to an already weakened body meant I was back on my back again, requiring weeks of rehabilitation just to get up and down again. This was the darkest point in my illness. I had reached my limit emotionally, psychologically and physically. Still suffering neurologically as well, I just couldn’t solve another problem or make another decision. But I am blessed. I put my life in the hands of my father and best friends. With my son going to college soon, I made the decision to move from Memphis to a studio apartment for disabled in midtown Nashville where I’d have some independence being only a cab ride away from pharmacy, stores, restaurants and medical center.
While I waited on the 2 year waiting list to get in, I relocated to East TN to have my best friend’s support. As my mental and physical health improved, I began contracting web design projects. After Ning began charging subscriptions, I was honored to get a grant from WEGO Health to maintain our social network for another year. I successfully graduated my son from home school and got him admitted to the university of his choice. Life was good. One Saturday, a day after my first physical therapy session, I expected to be a little sore, so I didn’t worry about the discomfort in my chest each time I laid down. But that night, I had to sleep in the chair to get comfortable. Sunday morning, I was so rest broken I turned down a ride to church. By the evening, I had “self” diagnosed myself with pleurisy, a common secondary condition for lupus. Based on my previous experience I decided I could wait til morning. I figured I could have my best friend drop me at the ER to get a round of IV steroids and be done by the time she got off work. I didn’t worry about the EKG. They always do that. But afterward, a team of doctors came in with papers to sign for catheterization to check for blockage and surgery immediately afterward. Now I’m scared. Well, there was no blockage found, so I assured my best friend that it’s just pleurisy as I had originally “self” diagnosed. As we begin to relax, laugh and talk I felt little vertigo as if I was falling fast. My last words,”Raise me up.”
I awaken in a dark room, thinking it was later that evening on the same day. Wrapped up in a blanket in a chair in the corner was my son. How could he have arrived from college over 600 miles away so fast? Seeing that I was conscious he greets me saying,”So you finally decided to join us!” Perplexed by his presence, I ask how he did he arrive so fast. He explains he and other friends and family have been by my side for over a week while I had been on life support. At this point, I look down to see staples down my chest, evidence of the emergency heart surgery. After my last words in Kingsport ICU, I flatlined, “Code Blue!” Unable to be resuscitated, I was helicoptered to next larger town for heart surgery. Due to internal bleeding, I had 3 L of blood fill my pericardium causing a cardiac tamponade. The prognosis was so grim, that surgeons recommended my family come immediately for fear I would not survive. With their love, faith, and prayers, I awakened relatively pain-free and totally unaware of the trauma.
After another phase of rehabilitation, I improved and finally settled in my new studio apartment in Nashville. After 3 years I developed a large hernia in my colostomy surgical site in which most of my intestine was on the outside of the abdominal fascia that usually holds it in. After a couple of years, my lupus became stable enough to reduce my steroids and surgeons finally approved the very complex and dangerous surgery to fix a hernia and reversing my colostomy via two surgical procedures. The surgery went great but they discovered several large stones in both kidneys and I caught a MRSA infection. It took 3 months for me to get discharged for good. I lost over 30 lbs and it took months before I could keep much food down. This led me to my latest crusade for medical cannabis. I’ll refer you to my video for that story.
I reached the golden age of 50 this year, but I am healthier and happier than I was at 30. My medicine bag is a little less full and my lupus is under control with low doses of prednisone. I have successfully tapered completely off the 75mcg/hr fentanyl patches I had been using for over a decade. For the very first time, I am participating in the LFA Lupus Walk in September! I have resumed my career as a web developer full time and I am most excited about developing a new lupussurvivor.com to continue my mission of healing the disease through healing the mind, body, and spirit. Even on the unavoidable painful days, I try to find some joy in the little things that life has to offer because I know how blessed I am to be a Lupus Survivor!