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.

2010 Update

I have been trying to dictate my 2010 update since Dec 2009, but I haven’t been able to focus. For my 2009 update I was still bipolar enough for a manic episode to provide for a zealous writing opportunity about previous years experiences.  Three months have passed waiting for some special inspiration for a frame to review 2009 and introduce 2010’s goals. So I am going to freely summarize just what all has happened since my last update and see what I conclude. I began 2009 with my new holistic philosophy: Surviving The Disease requires healing The Mind, The Body and The Spirit. With this new mantra I had found a sense of contentment despite not necessarily solving all my problems. I had wasted too much energy in past few years in anxiety over the effects of my illness on every aspect of my life which was only contributing to the severity of illness.

I was still under the financial strain of managing without child support on the mere $1050 in Social Security Disability benefits, but somehow the lights stayed on and my mortgage was paid. I was living from month to month in finances, but my new philosophy was to live day by day. I had made up my mind to only deal with the here and now.  I paid what I could and bought only what I absolutely needed. Soon you realize how much you thought was really needed isn’t a necessity after all. I neither worried nor made plans about any future events for which I currently had no control over.  I began to only cross bridges as I got to them.  Although I continued to suffer from severe neurological deficits, they were no longer escalating.  Improvement had come from acceptance and compensation for them. Most importantly with more information about APS and NPSLE, I was not feeling so out of control and crazy. This mental chaos was no longer personal. I could objectively recognize it as the symptoms of frontal lobe damage.  The results of neuropsych testing had given me specific deficits to target. Superior IQ results gave me confidence that notwithstanding my inability to communicate the way I used to I was still the same intelligent woman.

Medicare was willing to pay 80% of the suggested neurofeedback sessions, but I still couldn’t afford the other 20% on just disability income.  Without any professional counseling, coaching or therapies available for rehabilitating my damaged thought processing; I have been left on my own to come up with ways to exercise my brain and recover abilities. Out of compulsion and hyperactivity I began many small noncrucial “projects” within the interface of the computer and internet where I felt most comfortable.  Inside the virtual world, I could take my time, spell check, copy and paste, my way to coherent communication.  The internet allowed this aphasic, dyslexic mind visual comprehension through icons, avatars and multimedia. Having difficulty composing an entire paragraph of thought, I found the 140 character twitter update box a perfect venue for expression. I began daily tweets on my favorite intellectual pursuit (classic movies) as a repetitive task to organize and focus my ADD mind.  As an aspiring web developer I was also providing myself with an internship in the latest development in social media as well. To my surprise I gained 1000 followers the first month! Because of my neurological breakdown, I really lamented my career goals being thwarted. By January 2009, I recovered some of my HTML/CSS skills to customize my ACMLS blog and start a Ning community website to beta test for fellow lupus survivors.  I joined facebook to communicate with some lupus friends and found over 100 more. Since then I have been encouraged by a few blogger awards.  As the spring of 2009 began I was finally beginning to feel some equilibrium. In fact, I was in the process of writing a blog with “Contentment” as the working title. On Easter weekend, my new philosophy, and my faith were tested like never before.

Without warning, I found myself writhing in pain which led to my son calling ambulance to take me to hospital emergency. By Easter morning I was having an emergency surgery for ruptured colon. I woke up with a colostomy!  The trauma of the surgery on a body already weakened by lupus meant I didn’t even have the strength to turn myself, let alone stand. I was completed disabled--bedridden again at the mercy of the nurse call button and whomever happened to answer.  I was in diapers because I couldn’t tolerate a urinary catheter and oh yea, I had a bag on my belly for the other. NOT LOL. I also had a gaping unstitched opening at least 6 inches wide from being gutted from my panty line through my navel. I have always been a pretty good trooper through thick and thin, but this was just tooooo much. I’d just begin to feel some rehabilitation from the long term effects of 2004 lupus episode and its complications.  I was finally feeling “contentment.” It’s just not fair for me to be dealing with this. Why ME?  I tried to keep a good face, as that’s all anybody seems to expect or allow from me. But honestly, I was not doing well. psychologically I don’t think I have ever been lower. There was no encouraging word to make me feel better and I was really getting sick and tired of people trying to encourage me. Not one of them had been through what I have gone through. They might be able to commiserate with one; maybe two of my life’s many tragic events. Frankly, I just wished they’d admit that this was an awful thing to happen that I didn’t deserve. Instead of repeating the same old platitudes such as something good is going to come out of this tragedy.

The fact is that bad things happen. Bad things happen to good people and bad people. Bad things can happen to anybody. Nothing good may ever come from it either. In order for me to go on, I had a choice to live with this bad thing or just give up and die because of this bad thing. My insightful son made it simple and plain. Mom, you could be dead without the bag or alive with the bag. Obviously I chose life. I realize that the good or bad outcome simply was the perspective I decide to take going forward. There is no guarantee that I had reached my limit on tragedies so I’d better come up with something better than simply not deserving them to deal with them. That outlook is a mine field for depression or insanity. I decided I could choose to find the best perspective possible no matter what tragic event life brings. This was how I had found days when my lupus and fibromyalgia pain was high; my spirits could still be higher by seeking something pleasant around me.

It took 2 months in the hospital and a rehabilitation center of grueling therapy to regain the strength to stand and take steps on my own again.  I rushed home in time to see my son take his girlfriend to prom in May.  The neurological deficits I had added another dimension to the difficulty learning the sequential steps and coordination necessary to care for my colostomy and maintain my own surgical site which was still a large open wound. (That’s a whole other epic story)  Having no one nearby to help me, my best friend from college brought me to her home to convalesce in June. During my visit she suggested that I moved to her little town. So I did.  I gave up my house and the city life for an apartment in a town of just 45,000. With that said, I believe I have  come to a conclusion: Less is more! Since I have been in this town with less people, I have gotten more attention. Transportation isn’t so hectic with all my medical appointments and errands in the same zip code.  I think it’s because more people have less to do and are willing to offer more assistance. Living in 1000sq ft ground level apartment instead of 2000sq ft 2 story house means I am more able to manage my home independently. Having downsized my environment and simplified my lifestyle I am making the most of my mental and physical abilities. It has been almost a year since my colon ruptured. It’s almost spring now and I am just about settled down to regular routines in my new home.  My son has just turned 18 and received admission to college.  For the first time in twenty years, I am looking forward to being on my own. The future is both hopeful and scary but I believe I might feel “contentment” again.

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"