Lupus "Balloon-Head" Ruins Another Dinner

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.

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

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

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.

Tuna & Milk Don't Mix

Warning: graphic descriptions!

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

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

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

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

My Christmas: Eat, Drink, Sleep & Be Merry

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

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

New Improved Toilet Seat

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

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.

what's been going on...

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.

replace material with spiritual

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

Emotional pain flares up physical pain. Internet friends therapeutic.

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?

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.