I was diagnosed with lupus cerebritis/CNS lupus in October of 2011. This was after going undiagnosed and misdiagnosed since January of that year (9months). I was tested for allergies, rheumatoid arthritis, liver disease, infectious diseases, cold/flu, and all sorts of things. I traveled around CO searching for a doctor that could help me.
My symptoms were quite random and began with joint stiffness in my hands and wrists. Also an occasional swollen knee (which I attributed to jogging) but then came hives, nausea, sun sensitivity, extreme fatigue, irritability, gradual hair loss, and eventually incessant fevers.
After months of gradually building up worsening symptoms, I got to the point where I was unable to use can
openers or twist the knobs on doors, could hardly get up and down off the floor to play with my then 2 year old daughter, hobbled around like a 90 yr old, was stricken with what I called ''migrating joint pain'' which moved all over my body every day, fevers from 100-104 degrees from August through October nonstop, major nausea, photosensitivity, and headaches. I was truly miserable, all at only 22 years of age.
Since my symptoms built gradually over the summer of 2011, I blamed each one on all sorts of separate issues and didn't know how to connect them since they seemed so random. I have a history of DVT (clot in my leg) from when I was only 15, and was always positive for ANA and other antibodies related to blood clotting and autoimmune issues. I was on blood thinners since age 18 and through my pregnancy with my daughter, diagnosed then with the clotting disorder Antiphospholipid Antibody Syndrome. Later, after my flare, I would realize that it's all tied together with lupus...
I was put on Prednisone in August for the unexplained joint pain. Made me feel terrible in a different way, barely reduced joint pain, and fevers/nausea all that stayed around. Increasing doses up to 40-50mg, which was a lot for me at a small frame 5'1''. Still no answers, docs noticed elevated white blood cells, high CRP and Sedimentation Rate(inflammatory markers), some protein in urine and still couldn't connect the dots. By this point, in September 2011, I was sick, tired, scared, and had no idea if my liver was failing or what and aftermonths of no certain diagnosis my own family was questioning how much I was fabricating symptoms or illness altogether. Trust me- going from an active 22 year old mom and fitness instructor to a debilitated weak blob on the couch was MISERABLE!! How could I fake that?? Well, I certainly wasn't imagining things and that was about
to become very clear.
I got an appointment with a rheumatologist in Delta, CO. She suspected lupus right away, but I didn't believe her since all the specialists I had seen for months would guess and be wrong or have no clue. Then they would TREAT SYMPTOMS (this for fevers, that for joint pain, this for headaches, that for rash... Totally missing the point of getting to the CAUSE of the illness). She gave me a strong steroid injection in the ass, and sent me on my way to be rechecked soon. That night, I stayed in Delta with my parents and little girl. I was amazed, my joint pain had seemingly vanished and I could use my hands again!! I was ecstatic! Thought I was cured, just needed a shot in the arse once in a while and after months of building pain and misery I felt better, finally!! Not so fast... My feeling better quickly morphed into euphoria, then nonsensical speaking, then hallucinations, and my parents rushed me to the emergency room per advice from my rheumatologist.
At St Marys in Grand Junction, they couldn't figure out what was going on, apparently, and since I was hearing bells and seeing lights and supposedly making all sorts of noises and insanity myself, they gave me Haldol- an anti psychotic medication. Well, I wasn't psychotic to begin with, and was actually experiencing Prednisone-induced psychosis which is NOT treatable by haldol. I had an allergic reaction to Haldol and fluid began building around my heart and lungs. Next came diuretics to flush the fluids out, and by this time I was catatonic and they figured they were in over their heads. I was on a slew of meds since my heart rate was also out of control (tachycardia) and really by this time I was ''elsewhere'' in my mind, lost in a cognitive nightmare/wonderland that I was struggling to figure out... Had no idea what was really happening to me at the time.
After multiple spinal taps (LPs) it was noticed that I had massive amounts of white blood cells/auto antibodies in my cerebrospinal fluid. Lupus cerebritis or CNS lupus was suspected so I was flight lifted to Denver to stay in Intensive Care at University of CO Hospital where a renound rheumatology team was.
I spent 90 days in Medical Intensive Care. The treatment course for advanced lupus/cerebritis is more steroids, now through infusions. Obviously I was extremely sensitive to steroids, and the secondary psychosis remained. I was lost in a world of terrifying thoughts, hallucinations, vivid lifelike dream worlds of torment and confusion. I developed the stereotypical butterfly rash across my face... would've been nice to have that before intensive care! I could recognize my family, but didn't know who to trust. I was convinced at times that the nurses were telling my husband and parents one thing, then trying to euthanize me on their own. I trusted few, and my behavior was erratic and extreme. All I recall is what I was being subjected to in my mind, trying to figure out what had happened to the reality I once knew, while on the outside I would range from a catatonic state to spitting on people (including doctors from what I hear) to kicking or punching or attempting escape. I do recall considering bashing through the windows of my medical experiment cage 7 stories up... Thankfully no one allowed that.
It was truly terrifying. I couldn't discern what was real and what wasn't. I wasn't blackout. I recall the vivid living nightmares to this day. I was strapped by my wrists to the bed at times. Other times they just shot me up with muscle relaxants or drugs to make me pass out. I rarely slept. My heart rate reflected my inner terror and so they gave drugs for that, too. Medical students would occasionally come in to observe me, like some sort of twisted experiment, but it was a teaching hospital and I understand now that those young docs need to be able to recognize Prednisone induced psychosis and mind altering stages of Lupus. Still, it was horrible. I even tried ripping out the port on my neck that was putting medications directly into my heart. Obviously a bad idea on blood thinners, yet I was convinced it was infected and had to go. Scary!
I was admitted via flight for life two days after my little girl's 3rd birthday. She stayed with my mother in law mostly, since I was in no state to be seen. I was also terrified for her, since I never got to say goodbye nor did I really get where she was or why anyway. I dreamed of reliving strange things like childhood experiences at church or far fetched schemes that the devil was playing out. Horrible. I feared for my life, and my daughter. I turned 23 in the hospital and didn't know it. More and more drugs, and I wasn't really eating. I wasted away to about
100 pounds while I was in there, despite them and my concerned family bringing food and smoothies and anything. I occasionally ate if I was out of mind-torment long enough. Sometimes food ended up anywhere but in my mouth. :(
The final treatments were rounds of Cyclophosphamide (Cytoxan) infusions. I was gradually coming out of the medicated and psychotic haze after months, and was allowed to walk arya bit. My legs were unsteady and quite weak. I had lost lots of hair, and was losing more due to the chemotherapy. My skin was dry and pasty, and very white since I hadn't been in the sun all year essentially. I recall looking in the mirror and not recognizing the gaunt and frazzled being I saw. But my family was thrilled that I was coming out of it!! I was still far from normal brain functioning but better than since before the initial butt injection in Delta.
Infusions continued and I was able to leave intensive care and stay with my parents in Denver (December 2011). My daughter got to come stay!! I couldn't believe it, she was so precious. I had missed her and feared for her relentlessly. I was so thankful to have her back, but I couldn't seem to muster the strength to lick up her little 25lb body. Chemotherapy continued and I stayed on Cytoxan, lots of antibiotics, relaxant meds, anti anxiety meds, Prednisone, and my blood thinners. I was a little confused and thought maybe the infusions were for breast cancer. Eventually I was able to do some reading on my conditions, lupus cerebritis or CNS lupus as well as the Prednisone induced psychosis. Creepy stuff. I felt awful and wonderful at the same time, but my moods and behavior were still unpredictable so my mom stayed with me for a few months while my husband worked. I was finally back home in Rifle, CO.
Rheumatology in Denver monitored me closely, and wanted me to take antidepressants and such during recovery. I said no, I knew I would get better once I was eating well and exercising again. After such a severe flare and treatment they didn't really believe me. At the same time, they also couldn't believe I was making jokes and smiling, they had never seen that side of me before! I gradually tapered off the Prednisone completely. I was put on Mycophenolate Mofetil (aka CellCept) and plaquenil to control flares. Over the summer months of 2012, a year after symptoms were first arising, I was on the road to recovery. I took up yoga to build strength and balance, and once I had regained some body weight by eating again, I incorporated way more vegetables, fruits, and healthy fats like nuts and avocados into my diet. I was steadily recovering. My rheumatologist told my famy that it could take 2-3 YEARS for me to be normal again. I was instructing twice weekly fitness classes at my local gym by September of 2012, only 7 months after finishing chemotherapy. I built up to that point very gradually, and listened closely to my body. I also took a Human Nutrition course at the community college in town. Nutrition has become a passion of mine. I also accepted Jesus Christ as my personal Lord and Savior in secret in January 2012 during infusions.
I have since been able to wean off of the CellCept, just stopped taking it about
a month ago. Three years after my crazy flare. I was supposedly going to be on that drug for life, but since my inflammatory markers had been steadily decreasing, even with less medication (thank God! And nutrition!)... I stopped taking it since I was getting recurrent sinus infections thanks to immunosuppression and even pneumonia recently. Otherwise healthy and free of joint pain so I attributed the infections to my suppressed immune system.
I am now working on getting off of my final medication, Plaquenil, hopefully by this time next year. I continue to have regular rheumatology appointments, but most of all I have learned to listen carefully to what my body is saying. I do my best to eat well, stay active (I love biking, gentle hikes, walks, yoga-pilates, and dancing with my now 5yr old girl!), and I PRAY. I give all the Glory of my testimony and recovery to God. Jesus Christ is OUR HEALER and I am forever grateful for my health restoration and recovery. Lupus is a journey, a battle, a monster, but still NOTHING prevails over the Grace and Love of our Father in Heaven.
I wish you the very best, do not give up hope even if you are suffering now. Consider the stresses in your life, realize that foods like junk snacks and ''diet'' treats and SUGAR feed inflammation. Your disease is rooted in systemic inflammation but there are things you can do and eat to reduce that! Doctors are not nutritionists. Take your meds and listen, but know that you CAN control many aspects of this ''incurable'' disease. Research a Mediterranean-style eating and lifestyle plan!! It's NO DIET. It is a way of life that feeds your cells so that you have less systemic inflammation and disease activity. Lean meats (occasionally), fresh veggies, fresh fruits, healthful fats like nuts, seeds, olives, avocado, plenty of water and PROBIOTICS (good bacteria that make up your immune system in your digestive tract- try kefir a cultured yogurt type drink or kombucha or greek yogurt or a supplement). All these combined with stress reduction, rest, and faith- You Can Be Healed! Believe it. Own it. And don't hesitate to ask me any questions about
my personal recovery, it's ongoing. Love and God Bless!
Post Edited (CNS-Lupus/SLE_notforme!) : 6/9/2014 9:49:38 AM (GMT-6)