The Survivor

I am a 42 year old single African- American mom currently battling systemic lupus in its more severe form. June, 2004, I narrowly escaped death when a very sudden and aggressive attack shut down my pancreas and liver. While doctors were scratching their heads I suffered in ways I didn’t know was possible. I contribute my survival to my faith in God and his grace to allow me to live in order to to raise my 15 year old son, who has no one but me. My close call with death, although not the first has left me focused on the purpose of my life I have left and even more on giving purpose and meaning to the life I have lived.

The Mission

• Make "non-chronically ill" aware of the comprhensive effect of chronic illness on every aspect of a "survivors" being...mind, body, & spirit.
• Provide basic information and resources about disease in an easily understood, quickly accessed format.
• Information and tips for managing symptoms.
• Expressions of spirtuallity and intellect, that portion of us thats affected by disease but not determined by the disease. We are so much more than "patients."
• Summary of resources, sites of interest, links to other personal blogs, websites, and forums relavant.
• Place for other to share through comments, subscription, etc.

A Lupus Survivor's Timeline

The Life

By the time I was 18 years old my mother gave birth to my half sister, but the joy of her birth was soon overcast by my mother’s severe postpartum depression, which led to years of fighting mental illness. By 19 years old I was married. We had a beautiful son that suddenly became ill and was diagnosed with neuroblastoma on his third birthday. After a brutal protocol of chemotherapy then full body radiation for an autologous bone marrow transplant, we had less than a year of remission before he died at 4 years old. My marriage failed for obvious reasons. After my son’s death I received a B.S. in Biology with the intention of pursuing medical school. Exhausted and burnt out I decide to take off a year. During this time I become pregnant with my current son. I was so happy to have a child to fulfill the void left from motherhood. I make a decision to to put off medical school until he is walking and talking.
By the time I was ready to go back to school my general health began to deteriorate. I suffered two years with a variety of symptoms beginning with fatigue and frequent "colds" to the point of absolute exhaustion and disabling arthritis. I couldn’t even maintain a job. Eventually I had to also give up the clients for my home business. During the course of one week I ended up in the ER 3 times for high fever and pain. Next, one night I experienced a severe neurological event similar to a seizure, but I thought I had a stroke. The EMT asked me as they carried me out, "Do you have Lupus? " After countless visits to doctors and emergency rooms the previous two years not one had mentioned this mysterious disease to me. Without explaining the rest of my ordeals, I soon found he was right. In minutes he diagnosed what doctors had called "anxiety", ‘stress", and "arthritis".
There are so many lessons I have learned through these hurdles that I feel compelled to share. I do not want my life to go unnoticed. I believe my story can give inspiration to faith, love and perseverance as well as raise awareness to some underrepresented issues such as postpartum mental illness, the horror of childhood cancer, and the mysterious incurable disease of systemic lupus erythematosis.

2009 Update

2008 was defined as the year of new beginnings. In many ways it was. But beginnings are always something bright, shining and new. My year for beginnings meant revelation and resolution. 2009 will require reinvention. A beauty of a butterfly can only be realized after the transformative process of metamorphosis. Maturity and wisdom comes through learning, experience and revelation.

January, last year my expectations were high. But most of my perceptions were distorted by the euphoric high and mania caused by high doses of steroids as well as the neuropsychiatric component of my illness. That's the double edge sword of the current pharmaceutical treatment. Prednisone's suppression of the self inflicted immune attacks is life saving, but the havoc on the hormones intensifies many neuropsychiatric symptoms. It has been hard to determine the source of the devastation to my mind.

2007 was a year of tapering off the multitude of "anti-drugs"...antidepressants, anticonvulsants, antibiotics, etc. After 2008 was spent detoxifying, I began to feel like myself again. So I conclude that blind use of the pharmaceuticals led to a synergistic affect.

Unfamiliar with the extreme and strange symptoms uncommon in their usual lupus cases, my treatment was compartmentalized. Rheumatologists and Internist had referred me to other specialist to treat the unfamiliar "spells." The neurologist and neuropsychiatrist treated the "spells" according to the nearest diagnosis in their repertoire, "petit mal", "nonepileptic seizures." I eagerly consumed a daily cornicopia of brightly colored pills with every hope without any question. I became a zombie. I retained all of my knowledge but as a naive 6 year old. It took months of irrational behavior before I realized my mental status and began to suspected the drugs. That revelation led to the first steps of resolution, tapering my medications seeking non-pharmaceutical approach to managing my symptoms.

After being completely off of all the "anti-drugs", obsessive compulsive symptoms significantly improved. The overwhelming anxiety was no longer constant. I could recall the perceptions I had before. Beginning with detoxification, I began taking charge of my health I began asking questions. I began questioning, wikipediaing and googling every symptom, drug and doctor. The revelation was that many of my neuropsychiatric symptoms even certain strange idiosyncratic behavior that I'd developed were a part of a pattern consistant with frontal lobe problems. It didn't matter what the cause, traumatic brain injury of a car accident, ischemic lesion of stroke or something biochemically complex as Asperger Syndrome, their were defined set of symptoms that often occur together when specific areas of the brain are affected. No doctor had really defined what was causing my neurological problems. All they would do is tell me what it was not. I was not epileptic. Repeated MRI, EEG, etc that revealed nothing. They literally shrugged their shoulders. Yet I was prescribed antiepileptic drugs, because that's what they know. I was determined to have some concrete measurable evidence of the devastating neurological deficits that have turned my life upside down.

I read a poignant forum post about who could no longer work to support his family because he "couldn't think." The culprit APS. That was my next major revelation, the discovery that APS could be responsible for neuropsychiatric symptoms I was having impaired thinking, seizures, paralysis, etc. The APS website provided me with the first doctor, a hematologist, that had some familiarity with my strange symptoms. He recognized the foreign speech I'd aquired as a symptom not a West Indian accent its usually mistaken for. He'd witnessed a case of lupus with APS that aquired the same "accent". He warned that there's no cure or successful protocol for treatment. Comprehensive testing of blood and brain scans didn't reveal anymore. APS probably causes undetected tiny blood clots in brain capilaries coupled with the ubiquitous inflammation of lupus autoimmune activities to upset my brain chemistry, perhaps even causing TIAs or ministrokes. He could only offer continued maintenance of therapeutic blood thinners to reduce clotting and prevent the worse case scenario, stroke or pulmanary embolism. Having an expert acknowledge and clarify my symptoms within the context of SLE and APS was satisfying despite lack of new treatment He listened and didn't go straight to the prescription pad. I had made a decision not play guinea pig to anymore new fangled brain pharmaceuticals. He supported my decision. He also initiated the next major step of resolution. By suggesting neuropsychiatric testing for some measurable evidence of my symptoms and some help coping. I began very rewarding weekly sessions with a psychologist at the same cancer clinic trained for patient couseling. Not only have we dealt with the anger, grief, anxiety she has helped me find seek resources to solve the concrete problems such as a pro bono lawyer to help with child support or nonprofit organization help with home repairs I completed a battery neuropsychiatric tests in 8 intense sessions to produce a comprehensive detailed report on my brain. I finally had acknowledgment and evidence. My neurological deficits have been defined.

2008 marked the beginning of taking charge of my symptoms. I had already began to regain my stamina through physical therapy. I began a diet that's therapeutic and preventative for my chronic secondary conditions, IBS and UTI.Participating in online groups led me to find therapy through blogging and sharing over the internet.

I established The Mission based on my new philosophy of thinking wholistic:

Surviving The Disease requires healing The Mind, The Body and The Spirit.

Now I've I'm reviewing my web development skills to establish a new social networking site to collaborate with fellow bloggers. Ardent Cerebrations: The Musings of Lupus Survivors! Last years revelations and resolutions broke me from a cocoon, my own metamorphosis into a new butterfly, this year I plan to fly.

2008 Update

Having given up ambitions of a career in medicine to live on disability benefits for the last decade, I was so excited to be in remission and starting a new job in June 2004. My dreams were defered again by a very sudden and aggressive attack that shut 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 to raise my teenage son, who has no one but me.Once the crisis was over, I was completely paralized by the muscle atrophy of weeks of immobility in the hospital bed. Once home I quickly rid myself of 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 and caused DVTs in both legs to be dangerously overlooked. Before I could rid myself of the home nurse and port-a-cath, I was back in ICU with septiciemia.

The next year, 2005, still physically rehabilitating at home, God blessed me to begin online classes for an Web Development Diploma with funding from Vocational Rehabilitation! After the second quarter I began a significant neurological decline. Besides the usual brief staring spells. mild tremers and slurred speech, I began to have severe seizures or mini-strokes. My thought processes and mobility were so severely impaired I had to give up school and most everyday tasks. In the midst of desparately seeking treatment from neurologists, I was diagnosed with a golf-ball sized kidney stone, August 2006. Because of my blood-clotting disorder, a quick removal by lathroscopic surgery was canceled, opting for a safer removal by lithotripsy, taking five months of blasting to break it down. No local neurologists or psychiatrists have provided a successful pharmaceautical approach to my neurological symptoms. In fact I suffered new symptoms and side-effects from the multitude of pills I was popping last year. With the support of my wonderful primary care physician, I opted to "detox" from all the unproductive medicines, seek nutrition, alternative therapies, assistive devices to improve and manage with the current symptoms. I'm not cured but I am stable and hopeful. I am relieved to give up the desparate quest to be cured by either doctors or preachers. I am trying to accept where I am, because I now realize that where I am is where God has placed me and I am trying not to question it.

As I immerse myself in His Word, I surrender my will to His. As I seek to heal my spirit, I seek less to heal my body. "Jesus Christ God's Son Saviour"