The Life

Lupus "Balloon-Head" Ruins Another Dinner

2010-03-27T23:39:00.002-05:00

Was having such a good day, began cooking dinner. i have been waiting for a day I felt "smart" enough to make authentic spaghetti & meatballs for my son...but my lupus balloon head took over this evening. the results: a pan of crispy burned meatballs. I really want to cry. 2 lbs of good meat wasted. But mostly disappointed that I couldn't come through with the meal for my son. Until recently, he has been fending for himself. Actually he has been doing all the cooking since my brain began to deteriorate so much that I could not complete the steps to make a decent meal. I am still far from being able to manage cooking the way I used too, but I am improving. So on the days I feel clear headed I try to prepare some of the dishes I used too. Especially my son's favorites. Because I realize how little time I have left before he is off to college. Perhaps burning tonight dinner seems trivial to cry over. But for me, its a rare occasion for my mental and physical status to allow me the confidence to make a real meal. Today I promised my son I would make him whatever he wished. I began cooking feeling fine. Then that weird feeling of being heavy and light headed at the same time hit me. I had to go sit in my chair, thinking it would pass. Then my son comes in the room saying something about the smell. I suddenly became conscious of my surroundings again. Our apartment was smoky. I had lost track of time and what I was doing. I discovered I had let the pan of meatballs for the spaghetti burn to crisp. My son just reached over an gave me a hug, telling me it was okay. He could see I was about to cry. So I am trying to be patient with myself. Trying remind myself how far I have come. It wasn't that long ago I wouldn't have even attempted to roll up a meatball. It hurts that I can't even say when I will feel competent again to try this meal again. It may be tomorrow...or not. I try to just live in the here and now. Never commit myself to more than the present, because I can never predict my physical and mental abilities due the lupus.

Nothing New from New Rheumy...

2010-03-27T23:30:00.000-05:00

Finally got to my second rheumatologist appointment. With all the good reviews made by all the other physicians I've seen, I have high hopes for this man. w discussed test done last visit. My WBC was high probably due to long term use of prednisone; all my antibody test were good, except double stranded DNA. But it wasn't remarkable. He is still considering Cellcept as a future option to allow reduction of prednisone dosage. Doctors concerned about my suppressed immunity took me off Cellcept last year during hospitalization for colostomy. We didn't even discuss Cymbalta. Actually, the frequency and intensity of my fibromyalgia pain has improved now that my kidney stones have settled down. I reminded him that my greatest concern is my neurological symptoms. Physically I am feeling more stable than I have in been the past year; but my brain continues to frustrate me. When I asked my new hematologist for an explanation for the myriad of neurological symptoms that still come and go, she suggested that a previous CVA caused some permanent damage that has upset the circuitry and chemistry. With the recent discovery of nodules on my thyroid during neurological scans and hyperthyroidism indicated by blood tests, I began to wonder how many "crazy" symptoms can be blamed on my glands. I had also heard that many lupus patients develop hyperthyroidism. I asked my rheumatologist whether lupus or my drugs were responsible for hyperthyroidism. He says that Lupus nor steroid responsible. Although hyperthyroidism is also autoimmune disease that SLE isn't a direct cause of hyperthyroidism. Patients with one autoimmune disease are predisposed to having another autoimmune disease. He wouldn't give an opinion on my balloon brain, until he's gotten the endocrinologist input on hyperthyroid.

Family & Friends a part of the Healing Process for The Mind, The Body & The Spirit

2010-01-29T15:35:00.001-06:00

I was getting a little depressed Wednesday having the plans I made on the days I felt good being usurped again by my illness. Although I couldn't get around, in between my feeble mindedness I had some brain storms about future goals with my lupus website and potential social networking consulting. Yesterday morning I felt even worse because the antibiotics had caused me to get "yeasty" inside and out. Luckily I realized I had a back stock of Diflucan pills and Nystatin for my mouth sores. I got teary when I looked at the time which was around 11am. I had lost track of the time since waking up at 6 in the morning going in and out of my "spells" while trying to will myself to get up and complete a list of tasks stuck in my mind. Finally, my son gave me a pep talk to get me to just give in and try to relax. I received a call from my new neighbor. She was taking special orders from all her girls for a weekend meal to feed us through the forecasted snow storm. After 2 bowls of Mrs. Wanda's stew and cornbread, last night I finally fell asleep -- sound. I am feeling a bit better this morning.

I just wanted to share my week and express how family and friends can be powerful agents for healing. Sometimes more powerful than any medication. There was no antidepressant or anti-anxiety pill I could pop to immediately break a manic cycle of thoughts that often are apart of our disease. Lupus and fibromyalgia survivors often fight tension, mood swings, anxiety and depression as a part of drug side effects as well as the disease process. With just a few objective words my son made me to realize my tasks could wait and the world wouldn't come to an end. After easing my worrisome thoughts with words, a gentle touch of his hand in mine helped ease the tension caused by my "spells". ( Read Neuropsychiatric manifestations under Signs And Symptoms)

My neighbor's thoughtfulness and generosity went beyond just calling to see how I was feeling. Realizing I was without transportation she wanted to make sure I was well stocked before the storm. Understanding my current disabilities she prepared a nutritious 1-pot meal that would be easy to reheat and easy to serve and eat with a bowl and spoon. My son became apart of the healing process for The Mind, while my neighbor for The Body. Their sincere acts of love certainly were healing to The Spirit. My point is the people around can be instrumental to improving the quality of our life despite having a incurable chronic illness. Our family and friends are an important part of Healing The Disease through healing The Body, The Mind, & The Spirit!

To Sleep or Not to Sleep? Thats the Question Asked by Lupus & Fibromyalgia Survivors

2010-01-25T14:12:00.002-06:00

Most people don’t realize that the inability to sleep is the symptom and the side-effect with the most profound effect on the quality of everyday life for a survivor of lupus and fibromyalgia. A recollection of my experiences this past week illustrates the dilemma posed by the title, TO SLEEP OR NOT TO SLEEP.

TO SLEEP. Last Wednesday, I had a plan. I expected to come home from my last weekly iron infusion go to bed early taking advantage of the sedative effects of the Benadryl for a deep restorative sleep. See previous blog. That evening my deep sleep was disturbed by a terrible nightmare. Once I was fully awake I realized the nightmare was a subconscious rendering of the terrible painful spasms coming down my left flank down to my groin. I was soaking wet! It was the familiar labor pains for the kidney stone, no doubt. I was up all night in nauseating pain despite the Oxybutin and ice pack. NOT TO SLEEP.

Thursday, I was grateful to finally get the first of 3 ingrown toenails surgically removed. A step toward solving another painful situation that’s been nagging me for years. Unfortunately the hard wooden chair in the waiting room wreaked havoc on my lower osteopenic vertebrae. The residual soreness from birthing a 7mm urolith (what MDs call kidney stones), the ache of my lower back bones and remaining tender toes, was just enough to instigate a fibromyalgia pain flare. You know: pain begets pain. Although not as miserable as the night before, I suffer another fitful night’s sleep. The pain paradox: Sleep decreases pain. Pain decreases sleep. TO SLEEP OR NOT TO SLEEP that’s the question! For anyone suffering from fibromyalgia the question is will we sleep or not. We are caught up in a vicious cycle of trying to get restorative sleep that helps relieve our fibromyalgia pain. On the other hand we are trying to control our fibromyalgia pain so that we can get some sleep!

NOT TO SLEEP. Friday morning, I awake at 4:30am. That’s the magic hour that no matter what, my prednisone enslaved body clock awakens me. Occasionally after a trip to the bathroom, my morning meds and a light breakfast I can ease back into the most restful sleep possible around 9 AM. I have no explanation for this other than a decade of experiencing this sleep pattern. Unfortunately my environment and responsibilities don’t always allow me to sleep when my body signals me to. A beneficial side effect of last Wednesday’s IV steroid pulse is a boost in energy, so this Friday I am feeling it. Before dawn I am already bouncing from place to place like a busy bee getting stuff done about the house. My mind’s racing a bit too. I am talkative and extra optimistic. This is all good until Friday night arrives and my body has no intention of giving in to sleep. Actually there’s no sleep to give in to. I am wide awake. Not the least bit drowsy. I am guaranteed to be awake all night. Even the smallest amounts of the sleep depriving slave master, the corticosteroid Prednisone shackles its users with insomnia. I have been enslaved by steroids over 15 years and so far no prescribed tranquilizer, antidepressant, or other sedating drug has ever liberated me from its sleep depriving side effects. Under the whip of my steroid induced mania I try to do something productive. Thank God for the internet!

TO SLEEP. Predawn Saturday instead of awakening at 4:30 AM, I have already been awake all night. I feel a sudden yawn indicating an opportunity to give in to sleep. By 8:00AM I had escaped my steroid taskmaster long enough to slow down the incessant flow of thoughts and fall into a natural sleep. With a little more uninterrupted slumber I might hit the jackpot and achieve REM sleep. Phone rings. Should I let my voicemail handle it or should I step out of this rare cozy slumber to answer? I better answer. A phone call this early must have purpose. Good I answered. It was my best friend, who is still learning the idiosyncrasies of my fibromyalgic neuropsychiatric lupie lifestyle. Knowing I was at home, she might have worried if I had not answered. We need a push button to update voicemail greeting, just like an IM status, to say “Sleeping, check you later.”

Anyway, back to the point. TO SLEEP OR NOT TO SLEEP: That’s the decision lupus and fibromyalgia survivors have to make when the opportunity for sleep has bad timing. Although I was happy to get the offer to go Krogering from my good friend who was making time in her busy schedule to give me a ride, I had to contemplate whether giving up the chance to sleep was worth getting my monthly grocery shopping done. I considered I could probably stretch my stock on hand until next week. I had to also consider, I wasn’t having much pain and my brain was rather lucid. Even though the chance for a good sleep seemed imminent I was taking a chance on missing opportunity to shop while my fibromyalgia pain was low and I didn’t have the “balloon head”. Feeling somewhat rested on the few hours of sleep so far, I decided to get up and go. I enjoyed a really productive day on the 3 hours sleep achieved Saturday morning. Feeling so well Saturday I went to sleep that night with great expectations for Sunday including going to church and cooking dinner.

Sunday morning I was awake at dawn after sleeping through most of the night; however, though I was not really sleepy I was not rested. In fact I felt absolutely exhausted. My stiffening joints and that feeling of impending pain lets me know precipitation was in the forecast. Early morning pain and nausea is not unusual. I did my stretches, and added an immediate release MSContin pill to my morning meds hoping to resolve my fibromyalgia pain and inflamed joints by the time I needed to get ready. By 8:00 AM I was faced with the familiar dilemma TO SLEEP OR NOT TO SLEEP. Although my fibromyalgia pain would have responded better to a stress free quiet restful morning, I decided to sacrifice the comforts of home and call for a ride to Sunday school. I wasn’t motivated by some masochistic view of suffering by going to church. I was motivated by the willingness to spend some spoons (non-lupie translation: spend some energy) and suffer some discomfort to fellowship with my best friend and new neighbors. If lupus and fibromyalgia survivors wait to feel energetic and pain free to participate in life’s events, well we’d never take part in anything. I chose the opportunity to share an experience with my best friend and fellowship with her church. Although the enjoyment I expressed was sincere, I suffered significant pain inflicted by unforgiving church seating: the Sunday school‘s metal folding chairs and the sanctuary’s thinly cushioned pews. In addition the lengthy morning service depleted my energy reserves. Lupus survivors have to suffer discomforts, negotiate time and energy constantly just to maintain our bodies and household responsibilities. So often socializing means a conscious decision to sacrifice limited energy and suffer discomfort to participate in activities with family and friends, even events that everyone else takes for granted as simply enjoyable or fun.

TO SLEEP. Last Sunday’s pain was the beginning of a miserable week 7-9 scaled neuropathic pain unresponsive to any medication inciting manic nights of insomnia and other neurological chaos. By Saturday I felt the pain lifting from my exhausted body and an overwhelming feeling of drowsiness presented the opportunity TO SLEEP OR NOT TO SLEEP! My friend called, informing me of the beautiful warm sunny day, perhaps hinting I should get out. No way today, these blinds are staying closed and I am going to sleep as long as my body will let me.

I’ve often been asked, "Don’t you take pain medication or something for sleep". Well yes, but often prescribed meds don’t work consistently. Some stop working over time. Doctors can’t tell which meds are going to work for which patients. So for patients it’s a trial and error process to find the right drug combination for results. Some patients don’t respond to drug benefits, or they have negative consequences with side effects. Occasionally either insomnia or pain doesn’t respond to medication and the patient has to ride it out. Over the years, I opted for some out of the box alternatives for sedatives such as my lavender candle, Celtic and Norwegian sopranos’ songs, Pranayama Yoga regulated breathing meditation, old fashioned prayer and journalizing/ blogging my thoughts.

It’s really important to get family and friends to realize how precious sleep is to your health as well as respect your opportunities for sleep. It’s important that patients communicate sleep problems and any special conditions needed for improved opportunities for sleeping well so that family and friends can support you.

3 H's of Corticosteroids Surprise Side Effects of Weekly Iron Infusions

2010-01-03T06:57:00.002-06:00

I actually look forward to my weekly iron infusions. My new hematologist recommended a 6 week course to strengthen my iron deficiency. She did a broad spectrum of tests in addition to my INR/PT test critical to managing my APS. Alls well with my blood. My ANA and other indicate autoimmuninty under control. Although Im not anemic and blood counts are normal, my cells seem to be lacking in iron the essential ingredient for blood to function. Iron is a mineral that --bonds to--carries vital oxygen necessary for all cells to thrive. Providing a supplement of iron intraveneous is the most efficient method of reinforcing my blood. Iron deficiencies may occur for a numerous reasons especially poor diet. My mildly deficienct blood probably the result of thinning blood and poor absorption through digestive process. For this reason, oral iron supplements may not be as effective.
After my first visit I learned the process is almost identical to the chemotherapy infusions (Cytoxin) I'd had previously, except 48 hours later instead of feeling weakened and nauseated, I feel strenghened and have greater appetite than ever. In my case, the actual iron infusion last only 1 hour. The first step (after trip to ladies room) is to check vital signs, blood pressure, temperature, etc. The most difficult and only potentially painful step is the insertion of of IV line. I am running out of good veins, but I have an adroit hematology nurse. My hematologist chooses to take some preliminary steps to deter side effects or allergic reactions. I take 2 extra strength Tylenal tablets orally to deter potential side effects of achiness or mild flu-like symptoms. A small syringe of Benedryl is pushed into the IV line. The a second syringe of a corticosteroid is pushed in slowly (about 2-3 minutes). Its purpose is to eliminate the allergic reaction that occurs RARELY. Much easier to prevent than have to respond to a dangerous anaphylaxis. But the nurse watches me very carefully and questions me during the infusion for any irregulararities especially signs of throat tightening.

There are some advantageous side effects I am scheduled for Wednesday mornings. The sedating effects of the Benydryl allow me to come home an enjoy a long satisfying nap the rest of the afternoon. It probably counteracts any nervousness caused by steroids. After a good rest on Wednesday, Thursday morning I am awakening with a little "boost" from the pulse of steroids. My joints aren't as stiff and I found my movements were more fluid and quick. No cartwheels, but I was doing everyday stuff without any thoughts (like a normal person). Getting out of my chair, showering, or unloading the dishwasher weren't so challenging. By the weekend I am eating everything in sight. I become giddy scaring my teenage son with my loquacious euphoria. "Mamma are you on drugs!" he says as I talk him into a corner about some grand scheme my maniacal mind has dreamed up. I had the 3 H's of corticosteroids: HUNGRY, HYPER & HAPPY

2009-06-11T13:32:00.001-05:00

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Tuna & Milk Don't Mix

2009-02-03T10:06:00.001-06:00

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.

Digital Scrapbooking: Therapy for Maniacal Insomnia

2009-01-03T23:55:00.007-06:00

I have discovered a new hobby..digital scrapbooking. I've been wanting to scrapbook forever, but no funds. This digital online interface works well with my latest neurological deficits. You can mail camera phone shots directly to your photobucket albums. The Scrapblog application allows you to upload any image from your photobucket albums. After saving your scrapbook,it becomes a slide show in your photo bucket album. Each page of scrapbook becomes a JPEG file capable of being edited and shared independently. Fun program, but a memory hog. Its moves PAINFULLY slow on my old IBM T40 512RAM. And really it must have been designed for a 17 inch screen...I wasted hours trying to find the 'done' button which does not display under normal IE browser settings.To navigate program's full dashboard, I had to toggle the browser window zoom between 100% and 200%. There were a million other bugs that had to be overcome before successfully publishing the final product. I lost an entire page I painstakingly worked on because it would not save my edits. The results were so pleasing I will probably toture myself to create another scrapbook during my next maniacal insomniac episode.

No that's not a view through my window

2008-12-31T03:03:00.002-06:00

Unless you count Windows XP...its my holiday screen saver! This is all I need to take down before New Year's Day

Luppie Brain Confession: Forgotten Gifts

2008-12-28T03:25:00.011-06:00

I took great care shopping around the internet to decide on these two well wrapped gifts. I ordered them custom wrapped in November well ahead of Christmas! But that was November 2007. I hid them from myself, neglecting to deliver them for Christmas 2007! Well undiscovered until Spring 2008, I decided to just wait for Christmas 2008. Hopefully they'll be just as appreciated this year, and that last years ommision has been forgiven and forgotten. I make my confession for the sake of fellow sufferers from luppie brain events!

My Christmas: Eat, Drink, Sleep & Be Merry

2008-12-26T01:41:00.003-06:00

The best way to define the Christmas experience with my family is a time line of eating, drinking, and being merry. Sunday, December 21, Pop arrives at my house with a silver flask of Conquito just for me. He also brought some of thick slices of ham he baked himself ...with Dijon mustard. Monday, December 22, after shopping, Pop's insist I experience Sonic's Hazelnut Iced Coffee to go with our sandwiches. Tuesday, December 23, We make the two hour trip to my aunts. As soon as I arrive, I'm offered homemade egg nog which I put on hold to eat a light dinner first... green beans, macaroni and cheese and ham! Then she begins to reveal the contents of all the pretty Christmas tins decorating the counter and bar: *exquisite elegant dark chocolate covered Bourbon Balls she made herself *gold foiled wrapped Ferrero Rocher hazelnut candies *milk chocolate and white chocolate covered pretzels *sugar cookies Especially nice for me were all the treats reminiscent of my childhood: *pink, yellow, white and chocolate brown coconut hand-dipped Bon Bons *assorted old fashioned hard candies *peppermints *the classic assortment of nuts: pecans,walnuts,chestnuts, n!$$@ toes *oranges and apples While everyone else was out shopping til late, my aunt and I got comfortable in our PJs, enjoyed watching movie and talking while sipping her special recipe of tea flavored with orange cinniman, ginger and other spices with a touch dark Bacardi rum. I indulged in one Bourbon Ball before bed. Wednesday, December 24, Christmas Eve Morning, my aunt prepared the family for the day with Scrambled Eggs, Bacon, Toast and her homemade Strawberry Butter. I never had anything like it. My cousin brought Bailey's Carmel to top off our coffee. This led to the first of my much needed deep naps. When I awoke everyone was out on errands, so I passed the time on the internet, sampling the Christmas treats and staying warm with more spiced tea After everyone came home for the night we ordered Pepperoni Pizzas, my health conscious cousin made a great salad with a variety of greens, sprinkled with almonds, mango flavored pineapple chips, and French dressing...washed down with a glass of White Zinfandel supplied by Pops. The children were allowed to open one gift apiece at midnight. We played a couple of rounds of their new games then hit the sack. Thursday, December 25, Christmas Day! Of course the children were knocking on doors getting everyone up Christmas morning. After the final exchanging of gifts, my Aunt prepared a grand Christmas brunch with Scrambled Eggs, Bacon, Ham, Country Fried Potatoes, Fruit, and French Toast topped with Strawberries and Whipped Cream! The sheer number of calories ingested at once put me in a catatonic state. I fell asleep in the big chair while the kids tested out the Wii. I awoke from the nap induced by Christmas breakfast to the aroma of Christmas dinner. My cousin prepared the most tender juicy turkey I'd ever had. I believe the secret was a beer marinade. Of course this was accompanied by traditional cornbread dressing and giblet gravy and the marshmallow topped sweet potato casserole...and a glazed ham! There was lime gelatin salad...but I don't do green stuff. The highlight of my holiday feasting is my step dad's Hot Water Cornbread served with his turnips and greens. Recipes inherited from his mother. I like to wait by him at the stove to take mine straight out the popping hot grease of the skillet to my plate. This year I decided to be adventurous and try...'chitlins'. I put about a tablespoon on the corner of my plate with a whole lot of Louisiana hot sauce. I managed to chew and swallow the first bite but decided that the peculiar aftertaste that developed once the heat left was just not something I desired. I went back for more Hot Water Cornbread to sop up the pot liquor from the greens, then I found myself running out greens and turnips to go with the Hot Water Cornbread, so I'd get a little more of them. It was a never ending cycle into gluttony. I vaguely remember washing down the last plate with a glass of Beringers. I never made it to desert. No problem, my Aunt packed generous portions of Coconut Cake, Caramel Raisin Spice Cake, Butterscotch Cream Pie and Ambrosia to indulge once we got back home. Friday, December 26, In the morning before packing for trip home, we experienced a encore of Christmas Brunch. After another nap we headed down the interstate home. Suddenly, we're detouring down the highway and pulling up to a mom and pop store. My step dad wants us to try some of the Pork Pulled Meat Barbecue he was telling us about....and the Potato Salad! So that's my family's holiday story...eat, drink, sleep, eat some more and be merry!

An Appreciated Stocking Stuffer

2008-12-23T03:31:00.003-06:00

Besides home repairs, Pops got my broken bifocals fixed up for Christmas!

New Improved Toilet Seat

2008-12-23T02:49:00.003-06:00

Pops finished installing this cushioned toilet seat that replaced the old hard wooden one. With no room for chair, also provides a soft comfortable place to sit instead of standing in front of the bathroom mirror to groom at the vanity after my shower. Its the little everyday comforts that really improve the quality of our lives.

Time Wasted: A Precious Gift

2008-12-22T01:38:00.003-06:00

My holiday weekend began with very little cheer. My son barely made it through exams Thursday with a terrible cold that developed into bronchitis by Friday. For the week, I'd brought a pain spell on myself by forgetting a morpheme patch change. Then there was IBS & UTI to add misery. As if that wasn't enough, toilet tissue was scarce. I'd made myself content with having no funds for Christmas gifts. I was going to be happy with just 'love'. Friday I discovered some mail from the bank that had been overlooked in the junk mail. Anxiety came over me when I saw 3 identical extremely thin envelopes from the bank amidst a pile of unsorted junk mail. I didn't want to destroy the content feelings I'd managed to find by examining the contents of the envelopes, but I did. Yes, I was overdrawn! Now I'm not just broke, I'm over $100 in the negative and dropping by $5 daily Its the weekend, too late to call. Doesn't matter, I only have $30 in rebate checks plus $7 in my purse. Not enough. I cried over it a minute then decided I couldn't do anything about it now so I would put it out of my mind until Monday when I could talked to bank. In the meantime, I would continue in the contentment I'd found before this unexpected crisis. I had no control over my fate with the bank for the moment. So while waiting for Monday, I'll balance my feelings of helplessness by taking charge of what I can control, by doing something productive and proactive. I'll lessen some of my negative feelings of anger and sadness by surrounding myself with things that bring gladness and cheer. So for the body, I made myself glass of homemade cranberry juice and a fiber bar. For the spirit I lit my scented candle and tuned into a Christmas movie. For the mind, I began working on my website design. I was up all night, but not for worrying about finances. I was up successfully finalizing the style of my websites. For the first time I'd been able to maintain focus and control my ADHD brain long enough to decipher all the code for the designs I desired to implement. Saturday afternoon, I was still working when the doorbell rang. It was my step dad! I'd totally forgotten about the possibility of his arrival for the weekend. Calling my disconnected ATT phone, he'd been unable to reach me so he just came on. It was a pleasant surprise, but my house was in chaos. God bless him, for not making me feel worse for not being prepared. Remember...I'm out of toilet paper... I had to send him right back out to get it! But never mind my lack of cheer, he brought all the Christmas cheer with him, beginning with a silver flask of Coquito ..... That's like a Puerta Rican egg nog. He gave me the greatest gift I've received in years. TIME. Over the past few years, with diminished body and mind, my greatest loss has been the attention of others. Unable to drive or be mobile in many ways I've felt left out the social loop. My contacts have been just curbside service for trips to the grocery, doctors or church. No one crosses my threshold to actually visit anymore. My identity has become lost in my illness. People do for me but not with me. But when my step dad came Saturday, he came to visit ME! Well, I'm blessed to have a father who actually shares many of the same interests, ie computers and the internet. We're willing to listen to each others techie talk. He let me show off all the web development accomplishments I'd been up all night working on.

Monday he accompanied me to the bank to discuss my error with the manager and get me out the red. Afterward, he spent the remainder of the day and all night on some much needed home repairs. All year I've been trying to find someone to do these simple repairs and assemble my bathroom spacesaver shelf, I purchased it for myself last Christmas, but my son was unsuccessful at assembly. I thought for lack of proper tools and experience. Turns out it was poorly fitted flimsy parts, yet my stepdad worked all night trying to make the best out them before deciding it was better to return the wobbly result. My point is not the shelf, but the patience, the time that my step dad gave in his efforts to give me my desire. That was the real gift. I will forever remember how we stayed up all night in the floor frustrated by that 'dat blamed' shelf. I will forever appreciate my step dad's willingness to waste his time...for ME.

Santa "St. Nick" Claus and the 3 Magi: Why We Give

2008-12-21T16:38:00.004-06:00

Fortunately, I discovered the real Santa Claus as a young child. Prior to kindergarten I read my Childcraft Encyclopedia. My favorite volume, was dedicated to explaining holiday culture around the world. Even then my favorite holiday was Christmas. I learned about many different customs different from my own. Most important, I learned about St. Nick the real Santa Claus. Santa Claus is the variation of Saint Nicholas. "Nick-Claus" He was a real live Christian whose generosity was so great he was venerated as a saint. Legend has it that he delivered gifts to children that were "good" passing by those guilty of misbehavior. Some of the motivation to stay off "naughty list" has remained in contemporary Santa.

Canon JIM ROSENTHAL ( Founder, UK/USA St. Nicholas Society ) says...

St. Nicholas was a real person — not a fairy, not someone who's flying through the sky with reindeer, but an actual person who lived and worked and died and had a full life. He had a Christian life because he was actually a bishop, a pastor.

Jim Rosenthal visits churches to help spread the Saint Nicholas message. READ MORE »

Most Americans, Christian or not are also familiar with the costars of every Nativity scene,The Three Wise Men or Magi who arrived at Jesus birth one silent night led by a star to a Bethlehem manger.

11 On coming to the house, they saw the child with his mother Mary, and they bowed down and worshiped him. Then they opened their treasures and presented him with gifts of gold, frankincense and myrrh. Matthew 2:11 (Today's New International Version)

Somehow the biblical story of the wise men's gift giving to celebrate the birth of The Messiah and the legends of the "gift giving saint" led to our Christmas gift giving custom. Children still enjoy the magic of Christmas through decorations and gifts, but where's the lessons from the original stories. The motivation to be good year round. The reverence for Christ and the principles He brought us. Like Jim Rosenthal I worry the original messages of altruism and devotion will disappear. Believe it or not the current secular mythology of Santa Claus was introduced by a minister in the famous poem "Twas the Night Before Christmas".

He was dressed all in fur, from his head to his foot, And his clothes were all tarnished with ashes and soot; A bundle of toys he had flung on his back, And he looked like a peddler just opening his pack. His eyes—how they twinkled! his dimples how merry! His cheeks were like roses, his nose like a cherry! His droll little mouth was drawn up like a bow, And the beard of his chin was as white as the snow; The stump of a pipe he held tight in his teeth, And the smoke it encircled his head like a wreath; He had a broad face and a little round belly, That shook, when he laughed like a bowlful of jelly. He was chubby and plump, a right jolly old elf. . . .

Coca Cola forever defined the jolly fat black belted,gold buckled, red suited, white bearded Santa Claus we know today through his commercialization in their advertisements. The current American Christmas has been sabotaged by the religion of capitalism. Buying and selling has become the most important ceremony of the holiday. Our retail industry is completely dependent on the Christmas shopping season to turn a profit and get out of the red every year. ( hence Black Friday after Thanksgiving ) There's no crime in holiday shopping. I just hope that we don't lose the original stories celebrating Christianity which inspired the tradition of giving gifts. Merry Christmas!

Santa, Ashes and Reynolds Wrap Metallic Silver Christmas Trees

2008-12-21T14:25:00.003-06:00

Like most American kids I was given the sleigh driving version of Santa Claus to believe in. The legend in my rural southern small town included the usual expectation of toys under the tree. There were caveats however to the magic. One eve, I vividly remember laying stiff under tucked covers giddy with anticipation over arrival of Santa, but most important I remember the fear and anxiety of trying to keep my eyes tightly shut. With my excitement, I'd given up all efforts to actually fall asleep, but I was told that children had to go to sleep Christmas night or Santa wouldn't come. That night as I gave in to peeking there was a magical reddish glow cast from the embers through the cracks of the hot black stove. I panicked at the thought of the mound of ashes growing at the bottom. Visiting older children had warned that if I was caught peeking Christmas Eve night, I would face the sure punishment of ashes in my eyes. This was the southern rural Negro take on mainstream 'coal in your stocking' tradition. Well our humble homes didn't have fireplaces nor cold bins of Victorian nostalgia. We kept warm by cast iron stoves fueled by kindling wood. I strained to hear the sounds beyond the walls. I was perplexed by my imaginations for Santa's sleigh navigation. We rarely had snow. Actually at this preschool age, I had only once witnessed snowflakes from a skimpy flurry dusting the ground with no accumulation. Our chimney was a pipe connected to a hole in the wall from the iron stove I was watching. Yet I heard activity. My grandma usually said prayers and went to bed with me. But this night I was sent alone. Was Mama out there assisting Santa? Perhaps this was a requirement for folks without the big fireplaces or grand roof tops I'd seen in my story book and on television.

I had witnessed the real live Santa Claus at the parade that circled the court house in town. He waived at me from a sleigh that was pulled by a tractor. Then I met him in person when we made that long car ride down the highway to the big city to Christmas shop at the fancy stores with elevators. I was led from a line to get on his lap and tell him what I wanted for Christmas. I didn't want to miss the opportunity to give him a list but I didn't care to sit in his lap. In fact I just didn't care for him at all. I did what I was told. They even took a picture that we took home in a pretty Christmas tree shaped card. Eventually, I fell sound asleep then awoke before dawn's light. The open door and smell of brewing coffee gave me permission to go see what Santa brought. Still dark outside, I stepped from the threshold of the bedroom to the "front room" of our little house. Bright red, green, yellow and blue beams of light were rotating across the walls bouncing off our low ceiling. Instead of one of the many green cedar trees cut down from our land, there was a fantastic adorned tree with shining silver needles like shredded Reynolds wrap. Each revolution of the colored light made the tree turn a different color. Underneath lay an assortment of unwrapped toys and clothes. I knew they were all mine. Santa Claus had landed his sled! Never found out how. Maybe Grandma simply let him through the front door.

So what , im cray, i cost no one

2008-12-14T08:00:00.000-06:00

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.

Will I get to work from home!

2008-12-08T20:52:00.000-06:00

Desperate for money, I surf an applied for jobs online all November. I was discouraged by the lack of any immediate feedback from any of the home-based or virtual jobs. I get daily junk jobs or sales rep from Career Builder. Other than 3 quarters of education, I don't have any experiance in my new path toward Web Development career. Today, Good News in my inbox.

Congratulations!

The LiveOps Community Sourcing Team has reviewed your work history, skill set, and quiz results and determined that your business is well qualified to certify to provide services to LiveOps for Outbound calls.

i did their online test in nov, got positive answer for this outsourcing co. its work as independent contractor, totally paperless online system....sort of a state of the art version of what i did for carl, and plan to do w my home based business. the link gives a good presentation. i already have a jack for dedicated phone line. i think my IBM T40 will pass. oh yea heres a blog @ working for liveops http://icanworkfromhometo.blogspot.com/2007/10/liveops-taking-calls-for-informercials.html

most severe case of balloon head I've had for weeks

2008-12-08T17:27:00.001-06:00

I'm having a bit of a panic attack. Today, I've had the most severe case of balloon head that I've had for weeks. That's what I call the weird sensations I get in head, because I feel like helium has been injected in my brain. It feels like its floating upwards. At same time I feel like a ball and chains is pulling from the base of my skull. I'm lightheaded and heavy simultaneously. I haven't been feeling particularly stressed. I was feeling psychologically uplifted by my step aunt's invitation to visit her for Xmas. Yet since rising I've been unable to focus at all. I awoke with a lot of FM pain, I thought I'd improve mentally after ridding pain. I haven't left room or bed. I keep ping ponging from one thought to next. Fortunately, no negative most of them. Its first time in while I haven't been able to coordinate make cup of coffee. I've been stuck propped up on pillows, occasionally hitting remote controls. Unable to focus on movies, unable to stand noise on other channels. I know music would help but each time I lean over to laptop to attempt, I get lost trying to. I keep opening tabs and windows. Having new ideas, distract me from the last. I've tried to give into it, not worry about not accomplishing any tasks id planned. Trying to talk past my tendency to become panicky and obsessed with doing all the stuff running through my mind at once. I'm very spastic, having difficulty coordinating simple movements. Freeze spells, like petit mals, keep me blanking out for minutes at a time. Or I fight my eyes going shut, and suddenly feelings of overwhelming drowsiness, like narcolepsy. In past id often give in to the compulsion to perform whatever I'm obsessed over. While I'm in altered state, I'm most likely to do or say something regretful. With feelings of being lost and confused, I begin worrying that I might be forget something important. If I remember an important task,like paying a bill, then i'd feel I had to get everything done right then because I might forget altogether later.this train of thought has led to many disasters. I'm improved because I'm m more familiar with these events. I don't get so anxious. I realize I can't let crazy mind dictate any of my actions. Its been an all day struggle, back and forth dialogue in my mind. I've got queasy stomach pangs. I wished I had someone to call, hold my hand, like a hot line for neurologically/psychologically challenged. I've had conversations in my mind all day, with people I couldn't call. II thought it be good to journalize the event, then decide to address my thoughts to you. Sorry about appointment mixups;insurance changes messed up my medical transport arrangements. I thought I was kicked off tncare, but got letter saying previous letter mistake. Still, I have new provider that didn't cover MataPlus. Good news, Americare allow me to call one time for recurring appointments. Bad news, receptionist says I need to request BlueCare for West Clinic.

Dead beat daddy's house

2008-11-28T13:55:00.001-06:00

Ardent Cerebrations!
Musings of A Lupus Survivor
http://alupussurvivor.blogspot.com
http://www.myspace.com/alupussurvivor

what's been going on...

2008-11-27T20:45:00.000-06:00

Appointment with probono attorney went well. i 'm waiting for bus to go home from Juvenile Court. After summarizing my child support case, she was initially at a loss with the interstate complications. She called an attorney at Juvenile Court for advice. When she realized I had no car. She drove me herself. She walked me through, and convinced someone in Interstate to go ahead and see me to get started despite some discrepancy about ability to do anything until w/o certified orders from MI. Anyway the clerk saw me and called MI and made request for certified copies/pay history. Hopefully this step will get me started in TN. I've been run around so much and told so many conflicting things, Im not getting hopes up. I still want everyones ears open for legal information. I still need to locate William B. Dalton since it appears he's changed jobs/ moved. I've had to put my health goals on hold to take care of business. I'm trying to suck it up; not think about what I don't have & I can't do. Honestly,though I still have felt physically bad, and brain stops, I've been overcoming my emotions, anger and tearful moments with much better support from William. He's been much more proactive and cooperative. He hates to give up some social aspects of school, but he's ready to give up the mind numbing environment and concentrate on college test scores. William IS my career, my life's work, so I really don't want to blow the only investment I have left. I just want him accepted and financed in university of choice, then I can retire! I've gotten Home school docs; I just need accurate transcripts from Memphis City Schools. William has just 4 required classes left We plan to do Algebra 2, Spanish 2, Jr English next semester(Jan), Sr English for Summer. Anything else's gravy. though my child support will be absent indefinitely, I think we can keep basic monthly bills w disability. Maybe one of us gets part-time income, soon. What I'm asking everyones help with is Home School expenses (software/books) instead of Christmas gifts. I've already picked out some software that's pretty self-serving. I'll send list after thanksgiving.

Lupus Survivor Stories Statistics

2008-11-27T17:35:00.000-06:00

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%

Finally got report on neuropsychiatric test.!

2008-11-27T17:09:00.000-06:00

Besides the obstacle of my carpel tunnel flaring up I have been extremely busy. it took a couple of months for them to correct my Social Security benefits and just now get jurisdiction for child support enforcement moved from Michigan to Tennessee so that I can pursue my sons dad for back child-support and hopefully eventually a modification. Just when I thought I had found his current address he has changed jobs again. without child-support and the missing 2 months of Social Security benefits I ended up losing my phone service with BellSouth. Luckily with a deposit I was able to get Comcast for phone and Internet services it actually will be cheaper. I was hurt to have to give up a phone number that I had had for over a decade but I'm thankful to be able to communicate. I was also facing utility cut off but an angel appeared in the form of an old classmate that I hadn't spoken to for 25 years. upon hearing my circumstance he immediately paid off my $500 balance. Otherwise I have some very good news. That I couldn't wait to tell you about. I've finally finished my weeks of neuropsychiatric testing and got a final report. his report was very detailed giving much more information than just establishing an attention deficit. But the main point is that I do have a serious attention deficit and problems with concentration primarily caused by the areas of the brain that involve processing thought. Basically the intellectual or IQ and verbal areas are still very high. 96 percentile. Superior even. but the performance areas which include thought-.processing was very low well like 25 percentile. The 2 main areas that are given me trouble are working memory and auditory processing. That explains why I can keep track of things or hold very much information at one time. For instance I can never hold a full phone number long enough to dial it. And because of the auditory processing problems that I often have difficulty comprehending what others are saying in conversations especially business phone calls. I could go on and on with the deficits that I've that. I just feel so much better having them acknowledged and documented. the neuropsychiatrist I've been seeing specializes in neural feedback that is an Alternative to drug therapies. Unfortunately I would still have a co-pay of $22 per session and I would need to go at least once a week in order to be effective. my current financial situation won't allow me to do this right now. I'm waiting for the results to be forwarded to my neurologist and then I will see what he has to say. Hopefully these results will at least give me something to use to show my vocational rehabilitation counselor in order to get some accommodations if I can ever get it together enough to go back to school to complete my Web development diploma program. I have 3 classes to go but maybe they will allow me to just take one class at a time instead of full time.

Nashville Trip Album:

2008-10-21T15:32:00.000-05:00

My son and I made trip to Nashville for my best friend, his godmother's, wedding.we had a great time with my hospitable stepfather in his small bachelor pad.he lives in a high-rise downtown with terrific views. We took some great pictures from the gazebo. We've got the chance to visit the local universities and a few sites. this trip confirm my goal to movemove back there backspace. when my son goes to college hopefully Vanderbilt.
Find more photos like this on UNITY IN PRAYER

Prayers Answered! Start Neuropsyche Testing Right Away!

2008-10-03T17:38:00.000-05:00

I continued to have a diminished neurological status the past week. Normally, i wouldn't go out especially not alone with such impaired thinking, but i didn't want to miss discussing neuropsychiatrist with my psychologist who'd been away on vacation. As storm loomed, I started morning off with fibromyalgia pain and nausea. The matAplus bus went about 30 miles in opposite side of town before getting me to my appointment half hour late. My neurology became so impaired i got lost in hall before getting to correct door to waiting room. Luckily my walker kept me from falling over as seizure descended on me just as i approached the receptionist counter. They recognized me and responded remarkably well. In minutes, I was being calmed by my doctor in her office. Once i was able to communicate she assessed all the problems that had contributed to my overload. She contacted an attorney for some advice. They informed me of nonprofit community legal assistance. She even went through the trouble of getting releases faxed etc. in order to talk directly to the neuropsychiatrist on my behalf to make sure i understood everything involved. She helped me outline a brief plan action for solving some problems in my personal business. She also helped me with script for discussing the insurance and fees for neuropsychiatric evaluation. Having such guidance relieved a great deal of my anxiety. Feeling more confident i called the neuropsychiatrist office the next day to discuss costs. I ended up talking with doctor directly. He was extremely cooperative, willing to bill medicare and allow me to work out any balance afterwards. He seemed genuinely excited about starting, saying to me "its gonna be like searching for clues to solve a mystery" I start next week, tuesday & thursdays for 8 sessions of neuropsychiatric testing!! Prayers answered! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Special Thanks! to everyone that emailed me prayers and scripture that got me through this difficult week!

Fever and Anxiety Back! Home Health Comes to Rescue

2008-09-27T17:51:00.000-05:00

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.

Halved my size

2008-09-25T11:53:00.001-05:00

Decreased meds! Halved my size! Last year's white linen cropped pant size 2X: 2008's replacement, sized 16.

replace material with spiritual

2008-09-19T15:48:00.004-05:00

renee, you blessed me so much with your message. connie was right to encourage you to share ti. and it was so nice to hear your voice. this morning i was coming to my own realizations about my life circumstance. i told my therapist that i am thinking of my life in a whole new paradym. ive been thinking if only i cold restore everything the way it was id get better. in my case, i thought getting new floors from flood damage and repairing all the stuff around here from 3 years of not being able to work. just when i got some extra cash thinking id fix up, my income was reduced even more from lack of child support. thats just the recent events. bottomline its been 2 years of failed attempts to restore this house. its seems that at the same time you were, i was also realizing maybe i just need to let go of my house. even with child support its 2/3 of my income. when my son turns 18 most of my income will be gone. so far i havent missed any house notes. i began objectively accepting worse case scenarios. decided to do what i can to keep phone/dsl, if anything goes first let it be electectircty. we have had plenty experience without power. got lanterns/coolers last summer when cut off over week. like you said, my pride had me worrying about what people even church folk would say to my lights out. but god knows ive done my best with what i have. i doubt many could live a week the way we have. but you said what most important, our spirit, our loved ones. my son told me he didnt care about keeping the house for his sake. he and i have been living in my bedroom since my illness anyway. so that means we only use about 200sf out of 2000. im hoping my son will attend college stay on campus. all i need is an efficency. he can sleep on the end of the bed or the floor to visit. i already have mini fridge/ microwave upstairs. since i began thinking like this and shut out the rest of the house and its problems, i have felt relieved. all year ive been wanting someone to come help me organize my stuff. now im like thinki ng of just keeping my pictures and keepsakes, and leaving everything else behind me. i havent made any decisions, or taken any actions, but just mentally letting go of the material things ive been trying to maintain or replace has been like a burden lifted. i actually opened my utilty bill, read $456 sat it down and went to bed last night. just last month, i would have went into anxiety attack and worry mode. not sleepping, barely eating until id made myself even sicker. hearing your testimony of letting go, really confirmed my faith and strenghthen my new attitude about whats important. instead of shame over idea of losing my possessions, you expressed so well that i should feel stronger as i replace material with spiritual. god bless

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

2008-09-14T17:20:00.000-05:00

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

2008-09-13T17:30:00.000-05:00

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

911 memorial

2008-09-11T10:14:00.001-05:00

Neuropsch Appt: Day 1

2008-09-11T10:00:00.001-05:00

New Neurologist: Anxiety turns Hopeful!

2008-08-30T18:33:00.000-05:00

I awoke aprehensive and anxious about appointment. I barely got MATAplus scheduled, I was not expecting it to cost $10.50 one-way for this Cordova office. I was feeling crappy nauseous and still slightly pained, but especially neurologically akward and irritable. I stayed up most of night reading highlighting info about right brain problems, autism, and communication disorders I've been collecting. I wanted to have words to describe what Ive been going through. I wanted to make sure I didnt waste any of the precious minutes I get with this specialist. After just 10 tense minutes with one of the supposed best neurologists in town I cried because, he was so intimidating I didn't remember anything I wanted to ask. He glanced at my chart and quickly disposed of me after confirming the same test results I've been getting since 1996...I'm not epileptic. Then proceeded to dismiss me because he only dealt with "epileptic" petit mal seizures. He offered no other recourse other return to the rheumatologists that sent me. That said I felt like I was on the defensive, as if on the way to the IRS. I was snappy with my son who seemed to be moving with too much liesure for someone escorting me today. I couldn't find my bag and the bus was already outside. But it was okay, for the first time in history they were actually 20 minutes early. Everything took a turn for the better as soon as I stepped into the Memphis heat, my favorite driver was already coming to the door to assist me. Carefully helping me along despite the fact that my son was behind me. We made it too the office early but I got worried when I realized it was 2pm an hour past 1pm appointment. Only 90 minutes before my pick up time. I notifid the receptionists, who called the nurse to get me back quickly. My first impression of the doctor was mixed. He wasn't cuddly for sure. And at first his questions were getting in the way of some of my answers while I was trying to hold on to the points I wanted to make. Soon I realized he had a method in the way he wanted me to answer. He didn't want me to express my "neurological problems" as symptoms. He wanted me to relate what I was actually having problems doing. After I gave a discourse on all the tasks that frustrate me and the lack of control over my own thoughts, he gave his initial assessment. He said the lack of evidence of any lesions on previous scans was good...no permanant damage due to lupus imflammation or stroke. He surmised that the physical damage of major lupus flare was compounded by stressful conditions and agreed that the multitude of drugs potentially created a serious biochemical imbalnce. His first impression, adult onset ADHD from what I briefly decribed. He would not guarantee any pharmaceutical cure, but drugs may help. What made me happy was that he didn't jumped to get the RX pad. He's arranging a comprehensive neuropsych evaluation he said would be much more in depth than previously done, before he even attempted to give me a DX or RX. I was done by 3pm, my son was waiting with a bag of Subway and my same driver was early and waiting to take us home. Thank God!

JOIN MY PRAYERS PLEASE!!! Neuropsych Appt at Noon!

2008-08-26T18:01:00.000-05:00

Please lift me (and the dr.) up in prayer this morning for the initial consultation I have with Neuropsychologist. Pray I can articulate and pray he listens. Pray his full services are cocered. Pray he can offer conclusive results. I thank you Lord for finally leading me after 2 years to a conciaentious team of home therapists who have really been supporting my efforts to explain my disabling neurological symptoms the past couple of weeks. I thank you Lord for the security and support I have found on the internet while unable to get outside home. God bless my RM friends. In Jesus Name.

First Neuropsych Appointment Goes Well!

2008-08-26T17:55:00.000-05:00

Monday night I streamed my prayers wirelessly by phone and laptop to my friends across town and cyberspace. I made sure I had the exact cash, $21.00, for the round trip fare on the MATAplus bus. I packed my folder of lists of doctors, medicines, and symptoms. I stayed awake all night, but that's not new. I was thankful to discover the address was an elagant but small traditional brick building within a subdivision of medical offices as opposed to some complex highrise. I had the benefit of having an escort, my son, this day to assist me and my walker up and down curbs and through heavy doors. The doctors office was very small but accomodating with a comfortable sofa and ulpolstered chairs. Important for professional patients. This neurofeedback institute consisted of a staff of 3: a receptionists, an administrator, and the neuropsychiatrist. They were playing the calming music of Enya, one of my own musical therapies, in the waiting room while my insurance cards were copied and more papers signed. The administrator intervened for the apparently brand new receptionist to explain that my state-based medicaid wasn't accepted meanwhile she gave instructions to the girl for my medicare verfication. I sat miserably anxious over the unconfirmed insurance coverage and with feverish anticipation about finally meeting the doctor. I've been seeking this type of specialized consultation over 2 years. I kept reviewing my symptom notes until he revealed himself from behind that office door. He turned out to be everything i'd been seeking and fulfilled his own description from the website. My hour went faster than my ability to say everything I'd noted,but i was satisfied that he understood my symptoms and my goal to have my deficits defined in medical terms. He summarized the tests and treatment he employs but warned about the limitations of medicare coverage as he led me out of his lair. Unfortunately by this time my RAM has reached capacity and I comprehended very little from this point on. I just know I fumbled to hand over my debit card for the unexpected $55.00 the receptionist requested after booking appointment for the next Tuesday. Agitated I relieved myself of the suffocation I was beginning to feel in that tiny office to wait on MatAplus in the shade of the decorative trees lining the driveway between buildings. I was thankful for the pleasant weather as i wait another hour for my transportation to arrive.

" National Invisible Chronic Illness Awareness Week" 200 MySpace Friends Spread the Word

2008-08-24T18:06:00.000-05:00

For my RM friends following my latest endeavors, here the MySpace bulletin I just posted. Continue to pray for my ordered steps. Psalm 37:23 (KJV) The steps of a good man are ordered by the LORD: and he delighteth in his way.

Its been 2 weeks for my Spread the Word campaign inspired by upcoming National Invisible Chronic Illness Awareness Week.! The first week I completed Phase 1 and Phase 2. I invited my friends from the social networking communities and forums I already belong to become my Ardent One! Myspace friend

Im continuing with Phase 3, inviting the friends of my new MySpace friends to become my friend, too. Today exactly 2 weeks later I have over 200 friendsThe soil of illness can be furtile! I'll keep planting seeds.

Don't forget to visit main site. Ardent Cerebrations: Musings of a Lupus Survivor!

Week 2: 209 friends

Spread the Word! The soil of illness can be furtile! 100 friends!

2008-08-17T18:18:00.000-05:00

I completed Phase 1 last Sunday of my Spread the Word campaign inspired by upcoming National Invisible Chronic Illness Awareness Week. In Phase 2, I am inviting my friends from the social networking communities and forums I already belong to become my Ardent One! Myspace friend I found a few of you their already. I thank you for adding me! Be my Myspace friend! I was going to post a goal of 100 friends for 1st week, well praise god, I checked at 1:43 am Saturday I reached 100 friends! The soil of illness can be furtile! I'll keep planting seeds.

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

2008-08-16T18:23:00.000-05:00

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?

2008-07-09T18:29:00.000-05:00

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.

Emotional pain flares up physical pain. Internet friends therapeutic.

2008-07-04T18:43:00.000-05:00

I thank God for the sunroom because its given an outlet to express my fears and my faith. I was just giving into tears tonight after a miserable day when I thought to check my RM emails. I have been trying to maitain a good attitude all week despite the enemy pulling punces at every turn. My finances are not in crises "yet." After month I realize my child support hadn't been paid. Today my son's SSD direct deposit missing. But the Lord was with me because after years of not being able to find my ex, I recalled a detail that led me to google up an article about him which gave his entire career. He had been promoted to CCO/President of a financial institution. He was president of one the state's oldest nonproft organization. There was even a link to a United Way Annual Report with him on the cover in a T-shirt helping young boys (our son's age) with computers! It breaks my heart to realize this man who dissed me and his son once I became too ill to be the "trophy" he needed for his ambitions. I had been model size 2 magna cum laude graduate on my way to PhD. This Tuesday I took $500 from my IRS rebate to retain lawyer. Although I was pleased with the lawyer and the prospect of back pay and modification, I returned home feeling sick and exhausted by the long bus ride, the heat, and my repressed emotions. I was not expecting the lawyer to try to confirm his existance at the bank by calling. I heard his voice for the first time in 12 years. It was the first time for my son. Since then my neurological status has been extremely poor. My pain has been relentlees the neuropathic FM pain is being fueled again by my urinary cramping and flaring hemoroids. The "freeze spell" seizures and scrambled thought processing has prevented me from even coordinating a bowl of cereal. I found solace in going to the sunroom Wednesday, since I wasn't up to Wednesday nite bible Study. Sometimes I go despite pain or "spells" but our small churches old fashioned wood pews can actually bring on more pain. I felt better emotionally after responding to my friends comments and prayer request. Hearing about others with great financial, family and physical struggles helped keep mine in perspective. Being able to give encouragement to another and perhaps be appreciated for my own struggles was empowering. Although the Klonopin allowed me a couple of hours deep sleep, I was awakened by my nieghbors roof repair before ready. despite a new patch, MSContin tablts and the urinary analgesic , I have been in 10+ misery for about 48 hours. The emotional wounds of recollecting my ex deepened the wounds I was already feeling from the abandonment I was trying to recover from in dealing with my "prodigal sister". After 2 years of estrangement she showed up last year to take advantage of my "weak mind" , Christmas spirit, and few dollars. But as soon as she got her car fixed (with help of my pastor} and paid off her warrants she was out of here without notice. Monday she snuck in house to get the belongings I had told her last year to store in my living room rather than loose them paying for storage. She didn't say a word to me. By the time I saw her and a freind loading vehicle through window she was gone. My son consoled me tonight when I could no longer hold back tears. He said he'd rather see me in muderous hatred and anger than to shed one tear of sadness and regret for her. I knew he resented me allowing her to stay, but I thought in my euphoria of prednisone and christmas spirit I could show her grace for her past exploits give her a chance to get on her feet and maybe we could have a real "sister" relationship. Now that my mental staus has improved, I realize that all along she had gotten wind of the couple of dollars settlment money. I am trying to have no regrets, money lost means little compared to lost souls of my family. Although I talk a good game out loud, I cannot stay angry, Even though its less painful sometimes. Emotional pain flares up my neuropatic pain and lupus sympttoms. Pray I can remove all my hurt feelings that sabatoge my health.

Independence Day Anxiety or Blessing?

2008-07-02T18:55:00.000-05:00

With my anxieties about the impending July 4th holiday I was attracted to read threads from Lisa Cohen's discussion topic, "... Recovery from December." With much of my mobility back, Christmas 2007 was the first I'd truly celebrated in 2 years. Without last year's obstacles from family and financial problems, I shopped, decorated, visited and participated in holiday events. But the week following New Years my son and I caught the flu from visiting relatives. He was down for 2 solid weeks, but with my unconditioned immunosuppressed body....I could barely leave bed for 4 weeks. My doctor made quite a fuss, she'd gone extra steps to prevent my exposure during flu season, even giving me cell number to call her directly to avoid waiting room germs. She warned me about the reality of my illness and impaired immunity...invisible to other well intentioned family and friends. Her tough words, "They will all be at your funeral talking about what a sweet person you WERE WHEN YOU WERE ALIVE!" She advised me to set goals and boundaries reasonable to the reality of MY particular health, because the price paid will be MY OWN. My family, friends, or church members encourage me to "participate", thinking "getting out" gonna cheer me up and energize me. Usually I really want to. But too often, I push myself through events...even Sunday service. Afterwards, I find myself home all alone, paying for the "good time" with incredible exhaustion, increased neuropathic pain and mental deficits. So I pray for the Lord's discernment in all decisions about all activities! I remind myself before spontaneously following the summer crowd that will come calling this month. Wisely pace my activities according to my illness and stamina. Most important, don't get caught up in the adrenaline of other vacationers. Make healthy choices about sleep, food and drink. I've learned observing these simple boundaries actually extends my holiday fun.

inches lost at the waist!

2008-06-30T15:44:00.000-05:00

size 24 summer 2007 becomes size 16 summer 2008. The results of tapering my prednisone and getting rid of the antidepressant anticonvulsants and anti-seizure drugs that cause me to get as large as 210 pounds in 2006. Before the big 2004 lupus flare up that required over 1000 mg IV steroids daily, I was down to a nice size 12 140pounds. PRI thing is that I'm a team 3 times as much food these days. In 2006 2007 I was living off coffee and pain killers and antidepressants and antiseizure drugs with very few meals because of a lack of appetite,not the due to be neuropathic pain the ordeal of passing kidney stones for months.

The Morning After...A Bipolar Lupie Autistic Fibromyalgic Insomniac's Victory (Rant Sequel)

2008-06-11T19:01:00.000-05:00

I had rather slow days neurologically last week as well as suffered from a nasty bladder infection so I was unable to make trip to grocery. (Recall my previous rant on unbelievable amounts of urine in middle of night.) It has been over 6 months since removing the urinary stint that stayed implanted for the 6 months it took to pass kidney stones, yet I am still continually plagued by infections. Thursday, I felt like a soggy dishrag sweating with 100 degree fever. With every move I felt razor sharp pain slicing through the bottom of my belly. Friday evening I was blessed to find 1/2 of an Azo tablet in an old purse. Thanks to God for the smallest victory. I swallowed this with lots of water then discovered the few sheets of toilet paper on the roll were the very last. I don't drive. I'm home alone. No one to send for help. Who can I call at this time? Thank God for 3 "Moist Towlette" packets! Immediately after my improvisation the phone rings. It's my cousin needing to unload her broken refrigerator. Well, I hadn't been grocery shopping so I had plenty of space in my fridge and freezer to rescue her groceries. She quickly brought them over after I negotiated a ransom of toilet tissue in return! Thank You Jesus! Now I could begin forcing water down by quarts instead of cups. By Saturday morn my pain was relieved by a watershed moment of Jell-O orange irrigation. What a blessing, I successfully prevented spread to my kidneys which often requires hospitalization to disinfectant. So what's the point of my vulgar story? Its more than exposing the horror of UTIs. Calamities for my cousin and I coincided and the result was a victory for us both. Life's full of little calamities and small victories. We should account for them both in our prayers and thanksgiving to the Lord. ~~~ Inspired by RM Todays Promise, 1 Thessalonians 5:18, give thanks in all circumstances, for this is God's will for you in Christ Jesus.(NIV)

The Morning After...A Bipolar Lupie Autistic Fibromyalgic Insomniac's Rant

2008-05-30T19:06:00.000-05:00

I guess I bragged too soon about a lack of anxiety. Last night I fell asleep reading Lisa Copen's book and highlighting the scripture she referenced about dealing with feeling anger and insults and abandonment. Last night the pragmatic logic and spiritual reasoning seemed so clear... But this morning I awoke with anxiety, my pain is great, im sick to my stomach and exhausted from a rough night of nagging discomforts. Although I slowly dozed off into a natural sleep around midnight (a new and rare event) my cramping right flank and burning bladder forced me to get up after just couple of hours. After relieving the familiar urinary pressures I was much too awake to return to the ephemeral rest I thought i was due. I was feeling thankful, I had ice cream -- my favorite sedative. I can deal with discomforts alot better if I can appeal to my other senses. Although, the cramping had caused the familiar radiation across nerve endings lighting up with pain, my growling stomach was quieted by the cold dessert and I began to nod off with my rabid brain lulled into sweet dreams by the TCM musical in the background. Unfortunately, in the background the echo of pain continued to the usual areas of vulnerabilty. My tooth, the only back one left, begins a subtle throb that's matched by one from my temples. I will nip this in the bud. I knock down 2 tylenol from the bedside. Tuning back in on my 1940's musical fantasy, taking deep rhythmic yogi breaths I manage to acheive a semisleep. My sweet dreaming discontinued again, this time by my scalp, which has become a cap of tension relentlessly gripping my skull from the base of my neck to the brows on my forehead. The urinary urgency had turned my romantic dance number into a nightmarish dream sequence of futile attempts to get to a working clean lavatory. The pressures on my head are a replication for pressures on bladder. Useless tylenol! The pressures of the outdoor precipitation are replicated in my joints. My knees locked in pain, barely sturdy I hurry to bathroom....again. How is all this fluid produced at 3am? I haven't drank this much in the past 24 hours. Now the radiation of neuropathic pain has been fueled to a full torch. Suddenly, I think, reach around feel if the pain patch is adhered to my back. Its there. Its the new replacement made last evening. I thought it had surely fallen off or id forgotten to replace the old one. A better explanation than none at all for this extreme burning pain taking over my whole being. My neurology so diminished by exhaustion, I couldn't remember whether I'd just taken the morphene tablet or not. I take one, hoping i haven't repeated a dose. The inescapable pain makes it impossible to grasp the supportive words of the book or attach my thoughts back to movie melodies. I must have eventually lost consciousness because I awoke in a panic after several consecutive blows from the car horn next door. I was angry as heck at the continued inconsideration of dawn sleeping, ignoring ordinances despite gentle reminders distributed by neighborhood association. Thus began the manic attack of flooding thoughts. The worries began about how I'm going to accomplish the day's goals in this altered state of neurology paralyzed by the trifecta of pain, fatigue and an impaired brain.

remembrance

2005-07-19T01:15:00.000-05:00

This is the beginning of my recording of memories, No order just thoughts flowing through my head, The earliest event of significance I recall, was the bus trip I made from Somerville, Tennessee to Virginia Beach for my third Christmas. It was my first time seeing a lot of snow as we passed through snow capped mountains. This Christmas was also the beginning of my love of Barbie dolls. I didn’t receive one that year, but my older cousins did and I became enamored with the beautiful doll and all of her stylish clothes and shoes. I don’t even remember what I got from Santa, but I remember the impeccably tailored hounds tooth coat and cap that I wore on my trip. The red satin lining made me feel like a million dollars. Even at that age I recognized fashion and quality. Later Christmases Santa would bring me my own Barbies with fashions just like my mommy wore. My favorite was Julia outfitted in her nurses uniform just like Diane Carroll on her hit TV show. She was a black doll and she had the same features as the original Barbie. I just never liked the fact that none of the dolls had my skin color. They were either pink or dark brown, never tan like me. I have countless sweet memories from my childhood living with Grandma. I was born in Detroit, MI, but when I was about eight months old my mother moved back with me to Somerville, Tennessee. Unfortunately my grandfather was dying from a cancer that had gone too long undiagnosed. My mother had the chance to spend his last days with him. After he passed, my grandmother’s role changed from taking care of a dying husband to taking care of a growing grandchild. My mother started a new chapter in her life as well. After having dropped out of high school one year because of her pregnancy with me, she finished high school with honors. There was never reconciliation with my father so he disappeared from my life. While I grew blissfully among the flower beds in summer and around the woodstove in winter in Grandma’s strict but loving care, my mother went on to college. While attending the small Methodist black college she met her first husband. Within a year they were separated and she came back home. My memories really don’t begin until she comes back. I thought she was the most beautiful lady I knew. I loved all of her groovy outfits and hairstyles I adored her like a fan, but it was my grandmother that I first called "Mama". I thrived at our rural home riding my red tricycle behind my grandmother as she gardened. Meanwhile my mother started a career in business administration. I continued to idealize her even more. Back in those days in that town it was not often you saw a black woman dressed up behind a desk in air conditioning. My mother eventually got a divorce from her estranged husband. When I was in first grade, she got an apartment, but I still spent everyday after school at my grandmother’s. It was about this time my mother began dating her second husband, an aspiring law student from Memphis the city fifty miles from us. By the time I was in second grade my whole life was turned inside out. After a civil marriage my mother followed my new stepfather, Earl, to Louisville, Ky. He had a brother and sister there, but more importantly, he had been accepted to the University of Louisville Law School. The day they came to get me from my grandmother’s was one of the hardest for both of us. She never really forgave my mom for taking me away. I was really all she had. I remember feeling totally conflicted. I didn’t want to leave Grandma and the only place I knew, but I didn’t want my Mom to go without me. My transition from the rural simplicity of life at Grandma’s house to the urban older black neighborhood in a tiny apartment was very difficult. I had to adjust to the somewhat ghetto attitudes of the children including my new stepcousins that lived in the same apartment complex. You see, I was not even used to playing with neighborhood kids. I was used to playing alone or with Grandma. I also had a hard time adjusting to sharing my mother and taking directions from a stranger, my stepfather. We really got off to a really bad start. As I said the apartment was tiny, just two rooms, a bedroom and living area with kitchenette. Before they made the makeshift sleeping area for me in a corner of the living area, I slept in the bedroom with my Mom. My stepfather slept on the pullout couch. Of course at seven years old I didn’t see anything awkward about this sleeping arrangement. One early morning I found myself in a very awkward position. I awoke to find myself alone in the bedroom. I slowly opened the bedroom door to peer into the living room. I could barely see through the haze created by the dawn sun peeking through the closed blinds. I continued walking forward not fully awake. I could hear heavy breathing. Rubbing the sleep from my eyes I slowly began to focus on the forms that began to appear in front of me. Suddenly I realized the dark and light forms on the couch bed were naked humans. That realization sent me running back to the bed. Even though I didn’t look long enough to recognize my mother and stepfather I deduced they were guilty of the act in the living room. I was quite troubled by what I witnessed until I confessed what I saw to my step cousins. They had had similar experiences; therefore, we concluded that it was something parents did. I eventually forgave them. Without realizing it, they often left sex education manuals within my reach. I read them all cover to cover. It was great preparation for later in life. I never had any hang-ups in that area. My stepfather and I developed a good relationship after the rocky start. We had a lot in common. We were both skinny with glasses. Even though he had a darker complexion, people would often say, "You look just like Earl". That was reinforced by the fact we wore the exact same styled wire rimmed glasses. He stressed education and intellectual development while I was an above average student who sincerely listened to him. He would often read his law cases to me and books about black heroes or African kings. I admired him for always knowing the answers to any of my questions. He was a human encyclopedia. I later learned that law school was actually a bit of a struggle for him. He also studdered. I believe this made it hard for him to communicate and certainly hurt his confidence. The crazy thing is that because I grew up with him I had complete patience listening to him. I was always interested in his conversations. He would encourage me and any other kid with his mantras, "Get an education!",or "Believe in your self!" Along with my mother’s support, he definitely made me believe that I could aspire to anything in life. Both of my parents were good role models. My stepfather had grown up with days he had gone hungry and yet he pursued a law career. My mother was a country girl who became an administrative assistant at the university. I was also lucky to witness the success of my step uncles. One owned a chain of grocery stores in Memphis and the other was a professor that had sold a chemical company and invested in real estate. The chemistry professor was the brother that lived in Louisville with us. I was close to his daughters. The eldest was my age and the younger one was just a year younger, but she always a bit immature. They also had a brother about five years older. He was always stuck in his room smoking marijuana. I had three step aunts. One in Memphis, one in Louisville, and one that eventually moved from Virginia to Louisville Earl’s eldest sister in Louisville was a great support to my mom and me. She probably stayed married to him as long as she did because of Aunt Verniece’s encouragement. When Aunt Eliza moved to town she was the final blow to a failing marriage. She and Aunt Fannie in Memphis tended to be meddlesome in their brother’s affairs. I had lots of step cousins in both Louisville and Memphis. In the beginning I got teased severely for my differences. I must have had a thick Somerville accent when I entered the family. Of course my "four eyes" were a source for jokes. As time progressed I became accepted as family, probably more than my mother. When I was still in elementary school, my older teen step cousins would allow me to hang out with them and their friends because I knew how to keep my mouth shut. All I really had to overlook was a few reefers, but I got to go to ballet practices and see boyfriends that were in bands and lots of fun and interesting people. Unfortunately this was the beginning of my life as a spectator. My mother exposed me to all the proper lessons such as piano and dance, but I never took to any performing talents like my cousins. I did excel in drawing and besides reading and TV, I was always drawing. We didn’t live in that tiny apartment long before we moved into married student housing on the university campus. There I was introduced to an eclectic group of friends. To be continued...