Tuna & Milk Don't Mix

Warning: graphic descriptions!

After replying to concerned facebook friend that I was feeling very well. Uncharacteristically well. The bliss I'd achieved over my sunny relatively pain free Sunday ended abruptly by midnight. A series of innocent events initiated a path to misery. I decided I was feeling lucid enough to prepare quick "tuna mac" in microwave. I successfully read and understood directions, remembered to turn off space heater. Forgetting would have meant lights out! I would have to grope in the darkness down the stairs and into the cold night air to reach the outdoor storage room feel for the circuit breaker to flip the switch. I returned to my laptop and prop of bed pillows. await the 7 minutes timer for the noodles to cook.

There's the familiar heavy lightness in my head. My eyelids flip and squint uncontrollably a few seconds as a vision of my son standing over me takes focus. He's asking whether I’m still making the tuna mac. I soon realize that I had lost some time to one of my "spells." My son assumes I've been nodding. He had avoided coming in my room because he was apprehensive about disturbing a rare nap. But as he examines my blank expression he catches my fixed gaze directly into his eyes. He realizes. He softly lays his hand on one of my paralyzed limbs. The gentle stimulus is enough to awaken my neuronal activity. I twitch all over as if shivering from a sudden icy breeze. This time he asks if I want him to complete the meal. I blink my eyes exactly one time and project my thumb up for the affirmative signal. I continue to concentrate to escape my altered state of consciousness. My body began to respond slowly to my mind. Obstructed by my heavy twitching blinking eyelids, with all my will, I focus. My brain slowly executes my thoughts. With great effort I see my arm rising in slow motion to bring my hand into view...

After laying immobile, mute, and hungry, I mouth a request for my nutritional drink to relieve my growling stomach. My son served me a bowl of the unseasoned tuna mac prepared with the recovered soggy noodles. It was pretty awful but I managed to eat most of it, just so I could take my medications. Unsatisfied, but being the end of the month, having nothing left in our pantry but a little cereal, I decided to fill up with Crystal Light and save the cereal for tomorrow's breakfast. Still feeling balloon headed I turned back to my position propped upon the bed pillows with my keyboard. The slight comfort of fullness became more of a bloated tightness. Slow vibrations accompanied by a wave of warmth ran across my body. It wasn't just my stomach growling, I felt the familiar cramp of a griping colon. After weeks of severe constipation I wasn't rushed. Perhaps this wasn't a false alarm, I'd been avoiding white bread and cheese, eating Fiber One bars and gingered green tea mornings and Ramen noodles for lunch, and hydrating myself with water and lemon, hot or iced in between. Oooooh no. Suddenly the mild cramp turned into a sharp constriction of my abdomen violently drawing my knees up to my vibrating belly. With my upper body bent over at 90 degrees I made my way to my bathroom just a few yards from the bed. The relief of a true movement of my bowels was soon betrayed by overwhelming nausea. Rapidly, thickening Saliva fills my mouth, my pajamas become sticky with perspiration, my head weighs heavier than I can hold. As my Vision becomes gray, I fight the inevitable fainting spell. Maintaining my sitting position on the toilet I lean over toward adjacent tub grabbing at the cold porcelain not wanting to hit the floor. I spat the warm thick phlegm hoping to hold back the contents of my stomach. I was praying for mercy against this unrestrained violent reaction of my entire gastrointestinal tract, praying that I would not be found by my son exposed and humiliated in a puddle of my own feces and vomit as I was by hospital orderlies in 2004 flare caused by pancreatitis. Like labor a series of uncontrollable relentless convulsions beginning deep in my bowels thrusting my whole body forward and projecting the contents of my gut up to my esophagus and out my mouth. The first thrust, mostly liquid with lemonade and meds seemed mild compared the second thrust of undigested tuna mac. I revisited that tuna mac two more times before dry heaving began. I held on to the comforting coldness of the side of porcelain tub too weak to move trying not to breath in the fumes. Eventually the blood that had rushed to my head found some equilibrium with the rest of my body. I managed to raise myself up again. I removed my robe fully dampened with perspiration, but remarkable only mildly soiled by a spot on the collar. After cleaning myself, I found the strength to make it back to my bed, but still shaking I decided to walk to my son's room realizing he wouldn't hear me over his heavy metal music.

I plopped myself on his twin bed and briefly explained I needed ice. This not being the first time, he knew to grab the "premade" ice pack from my upstairs freezer, I purchased for the purpose of having ice upstairs. As I decompressed from the stressful event a series of neurological events began, twitching, rolling seizures that settled down to a slightly catatonic state. I don't remember much more. I awoke hours later to the familiar clicking of my son's fingers on his keyboard and soft new age music instead of heavy metal. Still muted by aphasia only able to make slow movements, he read my desires from my eyes, acknowledged them with his own. With his assistance, I raised from the bed. Balancing my body with his steady arm, I concentrated on putting one foot in front of the other until we reached my bed. To my surprise he presented the robe I'd soiled. He’d laundered it clean and dry. I put it back on, falling asleep feeling wrapped in warmth and love.

So what , im cray, i cost no one

I told myself that if my peculiar activities w re crazy, then that's okay. Nothing I do cost anyone else, or does anyone harm; in fact, my fastidiousness, compulsions, obsession have led to providing roof over...sheltering too many parasites.
.../...
The only complaints come from the parasites and slackers that have taken advantage of ,my fastidiousness...

My delusions of grandeur have been selfless belief that I could "love mine enemies" by giving to them unmerited favor..a true christian
Hence my foolish fervent dedication to assisting my estranged sister.

So I allowed myself my convuluted steps, idiosyncratic logic to fit the surreal parallel universe interpreted or maybe misinterpreted by my brain. It doesn't matter if its psychological, emotional, neurological, or physiological. Its the reality im forced to live in. So I try to stop feeling guilty for indulging in my OCD schemes. I give in occasionally to relieving my compulsions. For they harm no one.

My latest epiphany...harness my manias into something productive. Translate my compulsions and obsessions into a craft, maybe even a career. My mind constantly races with ideas. I feel constant compulsion to document my every thought. I am obsessed with keeping notes and lists. Im also obsessed with facts...a maniacal thirst for knowledge. The discovery of wikipedia and invention of google has ...nourished my addiction. But whom im I really hurting. Should I be embarrassed if you happen to have to listen to my detailed ramblings on historical minuteua, scientific facts or movie trivia. (Im not discussing aliens or the fbi dental implants.) the anwer...blogging. The avenue to park my thoughts. The familiar electronic format , database structures are perfect interface for overcoming my neuropsychiatric deficits to not only record thoughts but sort them. Categories tagged/time stamped. Furthermore they provide opportunity to create legitimate content for web development..no one but me seems to remember my thousands invested in web development courses. I began privately blogging as a personal release for my own thoughts and obsessions...movies/politics. The blog also lend itself to collecting useful information, i transferred my lupus information to blogspot. Simultaneously, I began taking advantage of online support with participation on a few social networking sites. It wasn't long before I began analyzing the technical structure of the blogging and networking sites. Initially simpy enjoying the ability to customized the available templates. I began to explore the source code for more advanced customizations. Now im even studying developer tools and open source code. I decided to get involved in lupus/ii awareness by getting myspace/facebook friends...my adhd/ocd...actually led me to current projects, developing blog widgets...creating my own awareness forum based on the ardent cerebrations concept. Now I have something i m avid about to hold my attention for implimenting web development skills as well as creating my own support system...now I making my manic processes purposeful. Collecting content for my blogs... I can put information from roaming for hours to use as content for...a release for my pedantic tendencies can be appreciated or ignored by online readers.

Lupus Survivor Stories Statistics

Since its inception, September 9, 2008, the Lupus Survivor Stories Widget has told your stories via by 629 views. Besides the actual blog of origin http://lupussurvivorstories.blogspot.com/, the majority of the views were made on my blog collection's Ardent Cerebrations: Musings of a Lupus Survivor! welcome page and myspace pages. Considering the limited time I promoted this project in 2008, I found this response to our handful of stories encouraging enough to continue to collect stories throughout next year to promote Lupus Awareness in 2009. I believe social networking sites is an excellent venue for both support and awareness. Its empowering and FUN. So send me more stories...
Lupus Survivor Stories Statistics:
Domain / Widget Views / %
lupussurvivorstories.blogspot.com / 217 / 34%
alupussurvivor.blogspot.com / 107 / 17%
myspace ttls / 197 / 31%
grand ttl / 629 / 100%

Fever and Anxiety Back! Home Health Comes to Rescue

I barely made it up the stairs to the security of my bed before I gave in to paralysis and another "seizurific" evening began. Pushing myself to the max mentally and physically all week gave opportunity for another urinary tract infection. Cramps, chills and sweat ... Me to get up at 4 am to discover 101 degree fever, my 4th over past few months. Good sense says . Azo tablets, cranberries and water aren't enough you must go to doctor this time for an antibiotic. A sickening weight of anxiety attack was creeping upon me as I strained to construct each step necessary in pursuit of prescription. My brain was still malfunctioning unable to think or talk or move. I would have to get through navigating menus and holding for assistance in series of phone calls. First beg my Internist's office to work in an appointment on short notice. Next hope the Insurance will overlook the 3 day notice required to cover medical transportation cost. Last of all hope MatAplus has opening left for pickup tomorrow. Worst of all would be the long wait at doctors office. then i began to worry about yesterday's unexpected $55 copay. I was so disconbobulated when I left office that was feeling totally unsure of what i was to do next appointment. What was it for? Can i afford it? Was i supposed to call insurance or the neurologist first. I had that familiar but frightening blankness. With my neurology off and "balloon head" aura upon me, i couldn't think out anything this morning. I lay in bed stuck, lost and overwhelmed by all my unfiltered thoughts tiny and great until my PT rang the doorbell breaking my "spell." Thank God, she saved my day, having nurse come to my home for urinalysis, saving me calls and trip to doctor. A walk and talk with PT help give me enough sense to postpone next tuesday's neuropsychiatrist appointment until after an appointment with my medical couselor/ psychologist.

Blessed & Busy: Ordered steps lead to "Lupus Survivor Stories Blidget"

ive been stretched so far the past weeks. but thank god to be exhausted from actually accomplishing something as opposed to just being tired and weary from pain and worry. altho many of my health and financial problems still exist for once i have some promising things in the works. i can feel the physical benefits of pt. my first week of neuropsych tests went well. my med couselor found some potentially free or reduced legal aid. your prayers for me are coming to fruition. sorry i didnt follow up on my "spread the word" campaign last week. i barely found time for much between daily healthcare appts. my myspace blog has my most all day to day updates/journal ...too difficult to put updates on all the social networks i belong these days. i had such wonderful results recruiting new friends on myspace and facebook. reading so many inspiring stories led me to decide to collect them for lupus awareness. i developed a blidget or blogging widget called "Lupus Survivor's Stories" to highlight the life-threatening aspect of lupus. i know many of you have lupus or know someone who has had their life threatened by lupus...or maybe even lost a loved one. im including the request ive made on myspace and facebook, hoping some fellow lpus survivors will take time to share their stories. even when im too tired to post, i try to to surf thru and see what my friends are upto. be assured you all are apart of my daily prayers. angie The steps of a good man [woman] are ordered by the LORD: and he delighteth in his way! Psalm 37:23 (KJV)

Collecting Lupus Survivor Stories

My original focus for my blog Ardent Cerebrations: Musings of a Lupus Survivor! was to provide information TO fellow lupus survivors. October is Lupus Awareness Month! Let's focus on increased awareness ABOUT lupus survivors for our own family & friends who often see us as isolated cases, often mistaking our complaints as our own personal idiosyncrasies. Hopefully presenting our stories with their parallel threads will dispel some misconceptions among our families and communities. Criteria for lupus survivors stories: Give brief anecdote illustrating one of following categories... 1. A life-threatening flare or life-threatening complications due to drugs or lupus 2. Death of loved one from lupus 3. Stories of life-threatening emergency led to diagnosis Stories featured on "Lupus Survivor Stories Blidget" More information and blidgets featured @ http://lupussurvivorstories.blogspot.com/ http://alupussurvivor.blogspot.com/ http://www.myspace.com/alupussurvivor Contact me @ mailto:cerebrations4u@aol.com

What can I do for National Invisible Chronic Illness Awareness Week?

What can I do for National Invisible Chronic Illness Awareness Week? I can't get out to pass brochures or participate in walks. I don't have much of a social life outside my home. So from my laptop, propped up on pillows, I plan to increase awareness through my internet relationships. Phase 1, my goal is to increase my community of friends by establishing a My Space as an outpost to my blogspot Ardent Cerebrations: Musings of a Lupus Survivor! Phase 2, I am inviting my friends from the social networking communities and forums I already belong to become my Myspace friend. Phase 3, I'll invite the friends of my new MySpace friends to become my friend, too. Phase 4, Soon, I will cultivate new branches to my networking communities. I can broadcast bulletins that raise awareness to crop of new people and organizations. This is my plan to grow from the soil of illness!

Missing SSD Benefits: Mission Impossible?

Needing to pay the usual past due utility bill, I wait for the 3rd of the month midnght to check my bank account online. My benefits are there, just enough to cover automatic payments of my mortgage, insurance and tax. But the SSD benefit for my dependant is mysteriously missing. It took until the 16th for me to contact Social Security representative.

That's a tale of sabotage all by itself. With great efficiency, I went to www.socialsecurity.gov, conscientiously saved to My Favorite's Expertly investigated its FAQs. Recorded appropriate toll free number. That Monday the first available weekday, I call. I enter the labyrinth of menus. Twice I get lost and end up cut off requiring redial. Finally on the third I've got a little experience decoding the enigmatic menu selections. Almost there when my phone starts warning me with a repeated beep. By the time I realize its indicating "low battery" its dead. So the arrival of my replacement cell phone (remember it was sabataged already) was the first opportunity to complete my mission.

After straining my "ballooned" mind for a circuitous dialogue with their determined agent "Reggie" the only information revealed was that our current address which I gave him was wrong address for my son. I gave every street we'd ever lived on. Even pre-disability locations. He could not confirm any. Yet my address was ok.This is ridiculous! My own anxiety was ignited when my son asked, "Do you think Apryl [my estranged sister] had something to do with this." I'm told I must call local office. Voicemail says its closed. Surely she wouldn't go that far. I had to fight all night with that familiar boundless fear of the infinite unknown negative possibilities.

Next day a rendezvous with doctor. This morning after relating my conversation with 'reggie', this SSA agent told me she couldn't tell me anything over phone either. I'd have to come in person with ID. It's Friday noon. It took great self control to remain objective, not get emotional. Before she could hang up, I made a desperate appeal explaining I was disabled. "I can't just drive down to your office!" The idea of worrying at least another 72 hours through the weekend just to find out 'Why' was unbearable. I pleaded for her to reveal what in the world could possibly be the reason my son's benefits not being deposited. My direct deposits have been on time and accurate for over a decade! Furthermore, I've already given the previous agent every address I'd lived and he said he couldn't confirm any. Thank God, 'she' was sympathetic. She asked for our SS#s and within a minute she had an explanation. She didn't understand why 'Reggie' didn't just tell me, "We didn't recieve a reply to some correspondence we sent. His check is right here!" Mission Accomplished.