tag:blogger.com,1999:blog-88792153745900717892024-02-19T01:29:08.721-06:00The LifeMusings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.comBlogger45125tag:blogger.com,1999:blog-8879215374590071789.post-66302118982515530682010-03-27T23:39:00.002-05:002010-03-28T00:04:52.331-05:00Lupus "Balloon-Head" Ruins Another DinnerWas 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.<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-45752940467134139142010-03-27T23:30:00.000-05:002010-03-27T23:30:16.130-05:00Nothing New from New Rheumy...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.<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com2tag:blogger.com,1999:blog-8879215374590071789.post-62132645053811091832010-01-29T15:35:00.001-06:002010-01-29T16:28:10.777-06:00Family & Friends a part of the Healing Process for The Mind, The Body & The Spirit<div><a href="http://upload.wikimedia.org/wikipedia/commons/c/c1/Oral_thrush_Aphthae_Candida_albicans._PHIL_1217_lores.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="134" src="http://upload.wikimedia.org/wikipedia/commons/c/c1/Oral_thrush_Aphthae_Candida_albicans._PHIL_1217_lores.jpg" width="200" /></a>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 "<a href="http://en.wikipedia.org/wiki/Yeast_infection#Signs_and_symptoms">yeasty</a>" inside and out. Luckily I realized I had a back stock of <a href="http://en.wikipedia.org/wiki/Yeast_infection#Treatment">Diflucan pills and Nystatin</a> 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.<br />
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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 <a href="http://en.wikipedia.org/wiki/Prednisone#Side-effects">drug side effects</a> 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". ( <a href="http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus#Signs_and_symptoms">Read Neuropsychiatric manifestations under Signs And Symptoms</a>)<br />
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<a href="http://upload.wikimedia.org/wikipedia/commons/thumb/7/74/Emblem-favorites.svg/200px-Emblem-favorites.svg.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://upload.wikimedia.org/wikipedia/commons/thumb/7/74/Emblem-favorites.svg/200px-Emblem-favorites.svg.png" /></a>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 <b>The Mind</b>, while my neighbor for <b>The Body</b>. Their sincere acts of love certainly were healing to <b>The Spirit</b>. 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 <b>Healing The Disease through healing The Body, The Mind, & The Spirit!</b><br />
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</div><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com1tag:blogger.com,1999:blog-8879215374590071789.post-79978013126894734852010-01-25T14:12:00.002-06:002010-01-25T15:04:52.439-06:00To Sleep or Not to Sleep? Thats the Question Asked by Lupus & Fibromyalgia Survivors<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhLyJVHqTrjJ_KPLsrngaOei8WFg_hOq-fYdln2DU40VKVju3rj2R_p-DetUV5EyzfYLa4IWltc5THfFjssk8TjxWxvlbHY_Lb-cZtqiuaKJyywQm6DaAkx0OSx85x0E3O60htCfLypdo/s1600-h/Bernhardt_Hamlet2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhLyJVHqTrjJ_KPLsrngaOei8WFg_hOq-fYdln2DU40VKVju3rj2R_p-DetUV5EyzfYLa4IWltc5THfFjssk8TjxWxvlbHY_Lb-cZtqiuaKJyywQm6DaAkx0OSx85x0E3O60htCfLypdo/s320/Bernhardt_Hamlet2.jpg" /></a><br />
<div>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.<br />
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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. <a href="http://alupussurvivor.ning.com/profiles/blogs/3-hs-of-corticosteroids"><i>See previous blog.</i></a> 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.<br />
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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 <a href="http://alupussurvivordisease.blogspot.com/2008/07/featured-secondary-condition.html" target="_blank">osteopenic</a> vertebrae. The residual soreness from birthing a 7mm <a href="http://en.wikipedia.org/wiki/Kidney_stone" target="_blank">urolith</a> (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 <a href="http://en.wikipedia.org/wiki/Sleep#Restoration" target="_blank">restorative sleep</a> 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!<br />
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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 <a href="http://en.wikipedia.org/wiki/Dexamethasone" target="_blank">IV steroid pulse</a> 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 <a href="http://en.wikipedia.org/wiki/Prednisone#Side-effects" target="_blank">Prednisone shackles its users with insomnia</a>. 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!<br />
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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 <a href="http://en.wikipedia.org/wiki/Rapid_eye_movement_sleep" target="_blank">REM sleep</a>. 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.”<br />
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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.<br />
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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 <a href="http://www.youtube.com/watch?v=JPhh_pGuQXM&feature=related" target="_blank">spoons</a> (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.<br />
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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.<br />
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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, <a href="http://en.wikipedia.org/wiki/Pranayama" target="_blank">Pranayama</a> Yoga regulated breathing meditation, old fashioned prayer and journalizing/ blogging my thoughts.<br />
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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.<br />
</div><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-22775886177372823262010-01-03T06:57:00.002-06:002010-01-03T13:53:15.625-06:003 H's of Corticosteroids Surprise Side Effects of Weekly Iron Infusions<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3XXmaQnPOAkw_BKROh0ovb6BIB575U782TEA9l_Y1G6l4NyKmQkzjXJPg8yA6pjij7ZpVEabKHJlS6ZwrEEtwO1GKQ3KBsCt8sX9vhVrdO2eZ4o72KBmm4sGYG3h2CPlBN9XHYyVoSUA/s1600-h/IMAG0137.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3XXmaQnPOAkw_BKROh0ovb6BIB575U782TEA9l_Y1G6l4NyKmQkzjXJPg8yA6pjij7ZpVEabKHJlS6ZwrEEtwO1GKQ3KBsCt8sX9vhVrdO2eZ4o72KBmm4sGYG3h2CPlBN9XHYyVoSUA/s320/IMAG0137.jpg" /></a>I actually look forward to my weekly <a href="http://www.righthealth.com/topic/Iron_Infusions"><b>iron infusions</b></a>. 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.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLN9C8Hq5v98TNbcTt9vzmEHJ-4S2yg1XUiaxZuvqf4zGYjIv6BuyPQfpni1niEp2172QLg273rTiajhrt9incV6wUvcpLC3QqLYzcgqq5kWpjb7qKG51ok28jChAxYzxEI1wo4yeI-n8/s1600-h/IMAG0138.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLN9C8Hq5v98TNbcTt9vzmEHJ-4S2yg1XUiaxZuvqf4zGYjIv6BuyPQfpni1niEp2172QLg273rTiajhrt9incV6wUvcpLC3QqLYzcgqq5kWpjb7qKG51ok28jChAxYzxEI1wo4yeI-n8/s320/IMAG0138.jpg" /></a>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 <a href="http://en.wikipedia.org/wiki/Diphenhydramine"><b>Benedryl</b></a> 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 <a href="http://en.wikipedia.org/wiki/Anaphylaxis">anaphylaxis</a>. But the nurse watches me very carefully and questions me during the infusion for any irregulararities especially signs of throat tightening.<br />
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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 <a href="http://en.wikipedia.org/wiki/Corticosteroid#Uses_of_corticosteroids"><b>corticosteroids</b></a>: <b>HUNGRY, HYPER & HAPPY</b> <br />
</div><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com1tag:blogger.com,1999:blog-8879215374590071789.post-6755181348073123992009-06-11T13:32:00.001-05:002009-06-11T13:32:04.014-05:00<img style="visibility:hidden;width:0px;height:0px;" border=0 width=0 height=0 src="http://counters.gigya.com/wildfire/IMP/CXNID=2000002.0NXC/bHQ9MTI*NDc*NTAzNDMzNSZwdD*xMjQ*NzQ1MTA3MDQ*JnA9NzQ4ODEmZD*mbj1ibG9nZ2VyJmc9MSZ*PSZvPThiY2JjMjBmNTkyZjQwZTBhZGM2YzFjYzkxYzM4MTRiJm9mPTA=.gif" /><div style="background-color:#e9e9e9; width: 425px;"><object id="A874994" quality="high" data="http://aka.zero.jibjab.com/client/zero/ClientZero_EmbedViewer.swf?external_make_id=lTKFcByAiywUVI0H&service=sendables.jibjab.com&partnerID=JibJab" pluginspage="http://www.macromedia.com/go/getflashplayer" type="application/x-shockwave-flash" wmode="transparent" height="340" width="425"><param name="wmode" value="transparent"></param><param name="movie" value="http://aka.zero.jibjab.com/client/zero/ClientZero_EmbedViewer.swf?external_make_id=lTKFcByAiywUVI0H&service=sendables.jibjab.com&partnerID=JibJab"></param><param name="scaleMode" value="showAll"></param><param name="quality" value="high"></param><param name="allowNetworking" value="all"></param><param name="allowFullScreen" value="true" /><param name="FlashVars" value="external_make_id=lTKFcByAiywUVI0H&service=sendables.jibjab.com&partnerID=JibJab"></param><param name="allowScriptAccess" value="always"></param></object><div style="text-align:center; width:435px; margin-top:6px;">Try JibJab Sendables® <a href="sendables.jibjab.com/ecards">eCards</a> today!</div></div><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-44085207725259262982009-02-03T10:06:00.001-06:002009-02-04T10:17:31.070-06:00Tuna & Milk Don't Mix<div id="picture"><img src="http://www.blogger.com/post-create.g?blogID=8879215374590071789" alt="" border="0" /></div><div>Warning: graphic descriptions!
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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.
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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...
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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.
</br></br>
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.</div><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com51tag:blogger.com,1999:blog-8879215374590071789.post-76187763827569540062009-01-03T23:55:00.007-06:002009-01-04T00:39:26.504-06:00Digital Scrapbooking: Therapy for Maniacal Insomnia<div style="width: 540px; text-align: center;"><embed type="application/x-shockwave-flash" wmode="transparent" src="http://w204.photobucket.com/pbwidget.swf?pbwurl=http://w204.photobucket.com/albums/bb168/pisceanii/Family/2008%20Dec%20Holidays/2008ChistmasinJackson-Scrapblog.pbw" width="540" height="360"></embed><a href="http://photobucket.com/scrapbooks" target="_blank"><img src="http://pic.photobucket.com/slideshows/btn.gif" style="border-width: 0pt; float: left;" /></a><a href="http://s204.photobucket.com/albums/bb168/pisceanii/Family/2008%20Dec%20Holidays/?action=view&current=2008ChistmasinJackson-Scrapblog.pbw" target="_blank"><img src="http://pic.photobucket.com/slideshows/btn_viewallimages.gif" style="border-width: 0pt; float: left;" /></a></div>
<div>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.</div><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-9788902493175709472008-12-31T03:03:00.002-06:002008-12-31T03:03:00.521-06:00No that's not a view through my window<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLuud1_J1tmPs7fa2oCLji6K25VNCbu6exY4tOxFr4J4vEyCrrgzQ0eLkhqIXBghkb_4ubjSHSRwOGlYlKUrfhvAV1NvNdqhmuSIAF9-oculFklYFz7FPnYBGbbjLPIv1Ah8kRr9obvzU/s1600-h/IMAG0391_xmasscreensaver-719195.jpg"><img id='picture' src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLuud1_J1tmPs7fa2oCLji6K25VNCbu6exY4tOxFr4J4vEyCrrgzQ0eLkhqIXBghkb_4ubjSHSRwOGlYlKUrfhvAV1NvNdqhmuSIAF9-oculFklYFz7FPnYBGbbjLPIv1Ah8kRr9obvzU/s320/IMAG0391_xmasscreensaver-719195.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5284764068312098754" /></a></p>Unless you count Windows XP...its my holiday screen saver! This is all I need to take down before New Year's Day<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com1tag:blogger.com,1999:blog-8879215374590071789.post-62083767733593668702008-12-28T03:25:00.011-06:002009-01-23T23:49:00.553-06:00Luppie Brain Confession: Forgotten Gifts<p id="picture" style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilz6OpHJbi-GXU7ql7QRKWjuzksWzRhjulAyoMD0_Uozy8A0eoc0NQ4rE2tDgW7alGTjfHGxSbVrmXrN8pAk15yKQKTlR_4WU8ajf6Vf0FWVDIuFGgvShkOp1y7U_ITub0MA3ks7G9bdg/s1600-h/IMAG0392_forgottengifts-719175.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilz6OpHJbi-GXU7ql7QRKWjuzksWzRhjulAyoMD0_Uozy8A0eoc0NQ4rE2tDgW7alGTjfHGxSbVrmXrN8pAk15yKQKTlR_4WU8ajf6Vf0FWVDIuFGgvShkOp1y7U_ITub0MA3ks7G9bdg/s320/IMAG0392_forgottengifts-719175.jpg" alt="" id="picture" border="0" /></a></p>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!<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-82389238760622666572008-12-26T01:41:00.003-06:002008-12-28T19:26:53.728-06:00My Christmas: Eat, Drink, Sleep & Be MerryThe best way to define the Christmas experience with my family is a time line of eating, drinking, and being merry.
<span style="font-weight: bold;">Sunday, December 21,</span> Pop arrives at my house with a silver flask of<span style="font-style: italic;"> </span><a style="font-style: italic;" href="http://en.wikipedia.org/wiki/Coquito"><span style="font-weight: bold;">Conquito</span> </a>just for me. He also brought some of thick slices of <span style="font-weight: bold;">ham </span>he baked himself ...with <span style="font-weight: bold;">Dijon mustard. </span>
<span style="font-weight: bold;">Monday, December 22,</span> after shopping, Pop's insist I experience<span style="font-weight: bold;"> </span><span style="font-style: italic;"><span style="font-weight: bold;">Sonic's Hazelnut Iced Coffee</span> </span>to go with our sandwiches.
<span style="clear: left;"><span style="font-weight: bold;">Tuesday, December 23,</span> We make the two hour trip to my aunts. As soon as I arrive, I'm offered <span style="font-weight: bold;">homemade egg nog</span> which I put on hold to eat a light dinner first... <span style="font-weight: bold;">green beans, macaroni and cheese and ham</span>! Then she begins to reveal the contents of all the pretty Christmas tins decorating the counter and bar:
</span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i204.photobucket.com/albums/bb168/pisceanii/bourbonballs-1.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 160px; height: 120px;" src="http://i204.photobucket.com/albums/bb168/pisceanii/bourbonballs-1.jpg" alt="" border="0" /></a><span style="clear: left;">*exquisite ele</span><span style="clear: left;">gant dark chocolate covered <span style="font-weight: bold;">Bourbon Balls </span>she made herself
*gold foiled wrapped <span style="font-weight: bold;"><a href="http://ferrerochocolatesusa.com/">Ferrero Rocher</a> hazelnut </span>candies
*<span style="font-weight: bold;">milk chocolate and white chocolate covered pretzels
</span>*<span style="font-weight: bold;">sugar cookies</span>
Especially nice for me were all the treats reminiscent of my childhood:
</span><img src="file:///C:/DOCUME%7E1/Angie/LOCALS%7E1/Temp/moz-screenshot.jpg" alt="" />
<span style="clear: left;">*pink, yellow, white and chocolate brown coconut </span><a style="font-weight: bold;" href="http://www.cherrymash.com/coconut/">hand-dipped Bon Bons</a><span style="clear: left;">
*assorted old fashioned <span style="font-weight: bold;"><a href="http://www.mileskimball.com/MilesKimball/Shopping/ProductDetail.aspx?CID=CandyShoppe&SCID=Christmas+Goodies&ProductID=0000122936&SiteNum=0">hard candies</a>
</span>*peppermints
*the classic assortment of <span style="font-weight: bold;">nuts</span>: pecans,walnuts,chestnuts, n!$$@ toes
*<span style="font-weight: bold;">oranges </span>and <span style="font-weight: bold;">apples</span>
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 <span style="font-weight: bold;">special recipe of tea</span> flavored with <span style="font-weight: bold;">orange cinniman, ginger </span>and other spices with a touch <span style="font-weight: bold;">dark Bacardi rum</span>. I indulged in one <span style="font-weight: bold;">Bourbon Ball</span> before bed.
<span style="font-weight: bold;">Wednesday, </span></span><span style="clear: left;"><span style="font-weight: bold;">December 24, </span></span><span style="clear: left;">Christmas Eve Morning, my aunt prepared the family for the day with <span style="font-weight: bold;">Scrambled Eggs, Bacon, Toast </span>and her homemade<span style="font-weight: bold;"> Strawberry Butter.</span> 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 <span style="font-weight: bold;">Pepperoni Pizzas</span>, my health conscious cousin made a great<span style="font-weight: bold;"> salad</span> with a variety of greens, sprinkled with <span style="font-weight: bold;">almonds, mango flavored pineapple chips, and French dressing</span>...washed down with a glass of <span style="font-weight: bold;">White Zinfandel </span>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.
<span style="font-weight: bold;">Thursday, December 25, Christmas Day!</span> 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 <span style="font-weight: bold;">Scrambled Eggs, Bacon, Ham, Country Fried Potatoes, Fruit, and French Toast topped with Strawberries and Whipped Cream!</span> 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.
<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i204.photobucket.com/albums/bb168/pisceanii/Family/2008%20Dec%20Holidays/IMAG0454-1.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 346px; height: 240px;" src="http://i204.photobucket.com/albums/bb168/pisceanii/Family/2008%20Dec%20Holidays/IMAG0454-1.jpg" alt="" border="0" /></a>
<span style="clear: left;">My cousin prepared the most tender juicy <span style="font-weight: bold;">turkey </span>I'd ever had. I believe the secret was a<span style="font-weight: bold;"> beer marinade</span>. Of course this was accompanied by traditional <span style="font-weight: bold;">cornbread dressing </span>and <span style="font-weight: bold;">giblet gravy </span>and the <span style="font-weight: bold;">marshmallow topped sweet potato casserole...</span>and a <span style="font-weight: bold;">glazed ham!</span> There was <span style="font-weight: bold;">lime gelatin salad</span>...but I don't do green stuff. The highlight of my holiday feasting is my step dad's <span style="font-weight: bold;">Hot Water Cornbread</span> served with his <span style="font-weight: bold;">turnips </span>and <span style="font-weight: bold;">greens</span>. 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...<span style="font-weight: bold;">'chitlins'</span>. I put about a tablespoon on the corner of my plate with a whole lot of <span style="font-weight: bold;">Louisiana hot sauce</span>. 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 </span><span style="clear: left;">Hot Water Cornbread </span><span style="clear: left;"> to sop up the pot liquor from the greens, then I found myself running out greens and turnips to go with the </span><span style="clear: left;">Hot Water Cornbread</span><span style="clear: left;">, 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 <span style="font-weight: bold;">Beringers</span>. I never made it to desert. No problem, my Aunt packed generous portions of <span style="font-weight: bold;">Coconut Cake, Caramel Raisin Spice Cake, Butterscotch Cream Pie </span>and <span style="font-weight: bold;">Ambrosia</span> to indulge once we got back home.
<span style="font-weight: bold;">Friday, December 26,</span> 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<span style="font-weight: bold;">...eat, drink, sleep, eat some more and be merry!</span></span></span><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com1tag:blogger.com,1999:blog-8879215374590071789.post-50921029851566050592008-12-23T03:31:00.003-06:002008-12-28T13:50:06.470-06:00An Appreciated Stocking Stuffer<p style='float:left' class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcJpfX8P6xMFh_V7ZkE5cA5hgt0qEZ_MV7k7X4ie4zdnY5BhGUhWF8LeeRH-8II2ugyjrfgsU-NIQp_q0vV5aaNzjnCmuC5BDanRXmx3gZxEZ34Fl6k0QHac0AlNmKPwerJcxNm22glhw/s1600-h/IMAG0393_eyeglassrepair-723796.jpg"><img id='picture' src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcJpfX8P6xMFh_V7ZkE5cA5hgt0qEZ_MV7k7X4ie4zdnY5BhGUhWF8LeeRH-8II2ugyjrfgsU-NIQp_q0vV5aaNzjnCmuC5BDanRXmx3gZxEZ34Fl6k0QHac0AlNmKPwerJcxNm22glhw/s320/IMAG0393_eyeglassrepair-723796.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5284771392588709842" /></a></p><SPAN style='FONT-SIZE: 10pt; FONT-FAMILY: Arial; FONT-WEIGHT:Normal;'>Besides home repairs, Pops got my broken bifocals fixed up for Christmas!<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-3384303907672483012008-12-23T02:49:00.003-06:002008-12-28T13:50:50.349-06:00New Improved Toilet Seat<p style='float:left' class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuqOiJ5hyphenhyphenYT5KhkJ3gRe0orKKabrDgySDRxFJHT4gnIEf6hVbFXS1ReKHDG6dZ5RQWJlfU-pscXTPROsiOyX7VV7PxUd14j_0oEG_XfsZ8TB-v9V7oMBOQZWxHtQOMi5KcllIYZaqHO3U/s1600-h/IMAG0384_newtoiletseat-729116.jpg"><img id='picture' src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuqOiJ5hyphenhyphenYT5KhkJ3gRe0orKKabrDgySDRxFJHT4gnIEf6hVbFXS1ReKHDG6dZ5RQWJlfU-pscXTPROsiOyX7VV7PxUd14j_0oEG_XfsZ8TB-v9V7oMBOQZWxHtQOMi5KcllIYZaqHO3U/s320/IMAG0384_newtoiletseat-729116.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5284760673285954946" /></a></p>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.<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com1tag:blogger.com,1999:blog-8879215374590071789.post-20025069759473981742008-12-22T01:38:00.003-06:002008-12-28T14:00:31.109-06:00Time Wasted: A Precious GiftMy 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 <a href="http://en.wikipedia.org/wiki/Coquito"><span style="font-style: italic; color: rgb(0, 0, 0);font-size:85%;" >Coquito </span></a>..... That's like a Puerta Rican egg nog. He gave me the greatest gift I've received in years. <span style="font-weight: bold;">TIME</span>. 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 <span style="font-weight: bold;">ME</span>! 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.
<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3bUSwJoDjOoaZws_v03bJexa817ypZlF1GDwlnkWTwxruFjlmc6pmnnHUTgNL2tdT8x52luiVXvMJ6PkkVCgqtzSvhriETL0wrUHI_kvSayic3QkQTruSmcqEOG-sy-L7-fAAbOCpwyc/s1600-h/IMAG0390_spacesaver-748199.jpg"><img id='picture' src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3bUSwJoDjOoaZws_v03bJexa817ypZlF1GDwlnkWTwxruFjlmc6pmnnHUTgNL2tdT8x52luiVXvMJ6PkkVCgqtzSvhriETL0wrUHI_kvSayic3QkQTruSmcqEOG-sy-L7-fAAbOCpwyc/s320/IMAG0390_spacesaver-748199.jpg" alt="" id="BLOGGER_PHOTO_ID_5284762905185595090" border="0" /></a></p>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 <span style="font-weight: bold;">ME</span>.<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-9244599956411092612008-12-21T16:38:00.004-06:002008-12-31T19:07:33.467-06:00Santa "St. Nick" Claus and the 3 Magi: Why We Give<div style="float: left;"><p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivOd5d4eh7Z__TKejafkedZGau1PGt2GiXyNMPYb9ajmzk-BEE6D8XMh7N4Ho8agGYuS4KJlhj5BU5LD6i07mhXnnhsfPWbu3RKEwj0zerduYRgGvlE6RPlvWFXyojyjOgKDMqBHhpVIk/s1600-h/stnick-796159.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivOd5d4eh7Z__TKejafkedZGau1PGt2GiXyNMPYb9ajmzk-BEE6D8XMh7N4Ho8agGYuS4KJlhj5BU5LD6i07mhXnnhsfPWbu3RKEwj0zerduYRgGvlE6RPlvWFXyojyjOgKDMqBHhpVIk/s320/stnick-796159.jpg" alt="" id="picture" border="0" hieght="200px" /></a></p></div>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 <a href="http://www.stnicholascenter.org/Brix?pageID=23"> St. Nick the real Santa Claus.</a> 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.
<div style="clear: both;">Canon JIM ROSENTHAL ( Founder, UK/USA St. Nicholas Society ) says...
<blockquote>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.</blockquote>Jim Rosenthal visits churches to help spread the Saint Nicholas message.
<a href="http://www.pbs.org/wnet/religionandethics/episodes/december-19-2008/saint-nicholas-tradition/1688/"> READ MORE »</a></div>
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.
<div style="clear: both;"><blockquote>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. <a href="http://www.biblegateway.com/passage/?search=Matthew%202:11"> Matthew 2:11 (Today's New International Version)</a></blockquote></div><div style="float: left;"><p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOXWhm25lErxyRj0ZSeLUzRHqMzeTyGgGht-sHZSo4V8NdQiNyG2jo8z1plCIYsAdaqVGadJNGMT2v7bTLY3EGeXM-DMvPNmBYD7NhXTqh2aTt_bY7xTdqNWFzoMrZyAkUozkFCMhebRM/s1600-h/product_xmas_rm03s-762367.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOXWhm25lErxyRj0ZSeLUzRHqMzeTyGgGht-sHZSo4V8NdQiNyG2jo8z1plCIYsAdaqVGadJNGMT2v7bTLY3EGeXM-DMvPNmBYD7NhXTqh2aTt_bY7xTdqNWFzoMrZyAkUozkFCMhebRM/s320/product_xmas_rm03s-762367.jpg" alt="" id="picture" border="0" /></a></p></div>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".
<div style="clear: both;"><blockquote>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. . . .
</blockquote></div><div style="float: left;"><p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqNkEKJEAlW-fIQLR8Wsc_nWRmg_gAPFqDmcJs0-c5E0IhIa1-eXAofWjmJe0mWRj9iPCqXYkEB0Nb4hTbKWuqUGzYKnqgXsyVFj1lCTpyN8JQmSf4362zvhbSHx744fF_qzeSZ8Px9fo/s1600-h/r_santa-claus-ad-coca-cola-779379.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqNkEKJEAlW-fIQLR8Wsc_nWRmg_gAPFqDmcJs0-c5E0IhIa1-eXAofWjmJe0mWRj9iPCqXYkEB0Nb4hTbKWuqUGzYKnqgXsyVFj1lCTpyN8JQmSf4362zvhbSHx744fF_qzeSZ8Px9fo/s320/r_santa-claus-ad-coca-cola-779379.jpg" alt="" id="picture" border="0" /></a></p></div>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!<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com2tag:blogger.com,1999:blog-8879215374590071789.post-33083820505488961602008-12-21T14:25:00.003-06:002009-12-20T22:03:32.966-06:00Santa, Ashes and Reynolds Wrap Metallic Silver Christmas Trees<div style="float: left;"><div class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAENE40Uq1udg7nXpmMO8wewswXx0AXIT7Aro30ke1VuT06l27OEuJtXX_pKbK5YMVmnw9Nf1eJ9RDuKQCe1kkgBW52LoUSqMEPYhkMeoMDJjTymSMwiXid-LhFuzfEw03SxoKLDj_z-k/s1600-h/ironstove-733950.jpg"><img alt="" border="0" id="picture" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAENE40Uq1udg7nXpmMO8wewswXx0AXIT7Aro30ke1VuT06l27OEuJtXX_pKbK5YMVmnw9Nf1eJ9RDuKQCe1kkgBW52LoUSqMEPYhkMeoMDJjTymSMwiXid-LhFuzfEw03SxoKLDj_z-k/s320/ironstove-733950.jpg" /></a><br />
</div></div>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. <br />
<div style="float: left;"><div class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjDmY3MYU_c1JB4a7AZZE5daxHqot3uGBwvf7co1VeZKff4HmYwkVqFZ1FCgBT0QWBagFLcxpQuXzlul7fZeuLfI9Iqah98o0pzcZjdouJ6teptugkCmsdIrxn7YwbdX_v3anr32W1V_A/s1600-h/IMAG0374_InSantasLap-787381.jpg"><img alt="" border="0" id="picture" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjDmY3MYU_c1JB4a7AZZE5daxHqot3uGBwvf7co1VeZKff4HmYwkVqFZ1FCgBT0QWBagFLcxpQuXzlul7fZeuLfI9Iqah98o0pzcZjdouJ6teptugkCmsdIrxn7YwbdX_v3anr32W1V_A/s320/IMAG0374_InSantasLap-787381.jpg" /></a><br />
</div></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj53zgCwBKNEWOPw1ha466EhcWaapSx9DJOQ4-nqeaUejeFW6gYuRw3FpSbEP0X0On_MERVF_BDQroE7tSL9jr6itT3wCM4tmdmdRU7gBPzgOrJJHHgh711S6X96wJcVYZfplnAEViUjtE/s1600-h/AluminumChristmasTrees.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj53zgCwBKNEWOPw1ha466EhcWaapSx9DJOQ4-nqeaUejeFW6gYuRw3FpSbEP0X0On_MERVF_BDQroE7tSL9jr6itT3wCM4tmdmdRU7gBPzgOrJJHHgh711S6X96wJcVYZfplnAEViUjtE/s320/AluminumChristmasTrees.jpg" /></a><br />
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.<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-13051932586847219772008-12-14T08:00:00.000-06:002008-12-21T16:58:57.685-06:00So what , im cray, i cost no oneI 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.<br>.../...<br>The only complaints come from the parasites and slackers that have taken advantage of ,my fastidiousness...<br><br>My delusions of grandeur have been selfless belief that I could "love mine enemies" by giving to them unmerited favor..a true christian <br>Hence my foolish fervent dedication to assisting my estranged sister.<br><br>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.<br><br>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.<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com1tag:blogger.com,1999:blog-8879215374590071789.post-65551096295762841942008-12-08T20:52:00.000-06:002008-12-08T21:16:18.212-06:00Will I get to work from home!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. <p class="MsoNormal"><b><span style=";font-family:";font-size:10;" ></span></b></p><blockquote><p class="MsoNormal"><b><span style=";font-family:";font-size:10;" >Congratulations!</span></b><span style=";font-family:";font-size:10;" >
</span></p> <p class="MsoNormal"><span style=";font-family:";font-size:10;" >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. </span><a style="font-weight: bold;" target="_blank" __removedlink__1721766634__href="http://www.liveops.com/downloads/FINS/Financial%20and%20Insurance%20Services%20VBP/player.html"><span style=";font-family:";font-size:10;" ></span></a><span style=";font-family:";font-size:10;" ></span></p> <span style=";font-family:";font-size:10;" ></span></blockquote>
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
<a href="http://icanworkfromhometo.blogspot.com/2007/10/liveops-taking-calls-for-informercials.html" target="_blank">http://icanworkfromhometo.blogspot.com/2007/10/liveops-taking-calls-for-informercials.html</a><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-13428197828935220332008-12-08T17:27:00.001-06:002008-12-09T05:08:45.539-06:00most severe case of balloon head I've had for weeksI'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.
</span><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-24855930579849228892008-11-28T13:55:00.001-06:002008-12-21T16:49:08.186-06:00Dead beat daddy's house<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibTVo38WBnJMi6_52b4tzI8nX1J0nFShoP9EUzSQKhhbD7o3FzGsmn00GmL_WyjFNd90lI45r4o8BKrWxP44fekVtCntZfp1WQd52b7WCfJGq2hvit6GSYdDj8QUsOQZawMF_TV_vTtT0/s1600-h/813617_wmUThouse-754862.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibTVo38WBnJMi6_52b4tzI8nX1J0nFShoP9EUzSQKhhbD7o3FzGsmn00GmL_WyjFNd90lI45r4o8BKrWxP44fekVtCntZfp1WQd52b7WCfJGq2hvit6GSYdDj8QUsOQZawMF_TV_vTtT0/s320/813617_wmUThouse-754862.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5273799595295773746" /></a></p><SPAN style='FONT-SIZE: 10pt; FONT-FAMILY: Arial; FONT-WEIGHT:Normal;'><br><br>Ardent Cerebrations!<br>Musings of A Lupus Survivor<br>http://alupussurvivor.blogspot.com<br>http://www.myspace.com/alupussurvivor</SPAN><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-37263575716888318452008-11-27T20:45:00.000-06:002008-12-09T23:20:04.685-06:00what'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.<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-76191573984886313152008-11-27T17:35:00.000-06:002008-11-30T17:49:46.845-06:00Lupus Survivor Stories Statistics<div style="float:right"><object classid="clsid:d27cdb6e-ae6d-11cf-96b8-444553540000" codebase="http://fpdownload.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=9,0,0,0" type="application/x-shockwave-flash" width="170px" height="423px" id="InsertWidget_c35c671b-49ff-4862-b398-f4b923b8f679" align="middle"><param name="movie" value="http://widgetserver.com/syndication/flash/wrapper/InsertWidget.swf"></param><param name="quality" value="high"></param><param name="wmode" value="transparent"></param><param name="menu" value="false"></param><param name="flashvars" value="r=2&appId=c35c671b-49ff-4862-b398-f4b923b8f679"></param><embed src="http://widgetserver.com/syndication/flash/wrapper/InsertWidget.swf" name="InsertWidget_c35c671b-49ff-4862-b398-f4b923b8f679" width="170px" height="423px" quality="high" pluginspage="http://www.macromedia.com/go/getflashplayer" type="application/x-shockwave-flash" wmode="transparent" align="middle" flashvars="r=2&appId=c35c671b-49ff-4862-b398-f4b923b8f679" allowscriptaccess="never"></embed><param name="allowscriptaccess" value="never"></param></object>
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<div style="align= right">Since its inception, September 9, 2008, the <b>Lupus Survivor Stories Widget</b> has told your stories via by <b>629 views</b>. Besides the <a href="http://www.msplinks.com/MDFodHRwOi8vbHVwdXNzdXJ2aXZvcnN0b3JpZXMuYmxvZ3Nwb3QuY29tLw==">actual blog of origin http://lupussurvivorstories.blogspot.com/</a>, the majority of the views were made on <a href="http://www.msplinks.com/MDFodHRwOi8vYWx1cHVzc3Vydml2b3IuYmxvZ3Nwb3QuY29tLw==">my blog collection's <b>Ardent Cerebrations: Musings of a Lupus Survivor!</b> welcome page</a> and <a href="http://www.myspace.com/alupussurvivor">myspace pages</a>. 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...<b><br/>Lupus Survivor Stories Statistics:<br/></b> <i>Domain / Widget Views / %<br/></i>lupussurvivorstories.blogspot.com / 217 / 34%<br/>alupussurvivor.blogspot.com / 107 / 17%<br/>myspace ttls / 197 / 31%<br/>grand ttl / 629 / 100%</div><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-73004398256560852112008-11-27T17:09:00.000-06:002008-11-30T17:19:44.050-06:00Finally got report on neuropsychiatric test.!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.<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-34461894031401606312008-10-21T15:32:00.000-05:002008-11-30T15:36:02.873-06:00Nashville Trip Album: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.<embed src="http://static.ning.com/unityinprayer/widgets/photo/slideshowplayer/slideshowplayer.swf?v=3.9.1:11517" quality="high" alt="Photo Slideshow" width="491" height="385" allowFullScreen="true" allowScriptAccess="always" wmode="transparent"scale="noscale"FlashVars="feed_url=http%3A%2F%2Funityinprayer%2Ening%2Ecom%2Fphoto%2Fphoto%2FslideshowFeedAlbum%3Fsort%3D%26screenName%3D%26id%3D2159940%3AAlbum%3A18362%26tag%3D%26useTags%3D1%26fullscreen%3Dtrue%26x%3Dt0cpJBjAf0CvvJgjqToyJDLwlBQKQ9J0%26photo%5Fwidth%3D800%26photo%5Fheight%3D604&config_url=http%3A%2F%2Funityinprayer%2Ening%2Ecom%2Fphoto%2Fphoto%2FshowPlayerConfig%3Fx%3Dt0cpJBjAf0CvvJgjqToyJDLwlBQKQ9J0%26feed%5Furl%3Dhttp%253A%252F%252Funityinprayer%2Ening%2Ecom%252Fphoto%252Fphoto%252FslideshowFeedAlbum%253Fsort%253D%2526screenName%253D%2526id%253D2159940%253AAlbum%253A18362%2526tag%253D%2526useTags%253D1%2526fullscreen%253Dtrue%2526x%253Dt0cpJBjAf0CvvJgjqToyJDLwlBQKQ9J0&backgroundColor=FFCC66&fullsize_url=http%3A%2F%2Funityinprayer%2Ening%2Ecom%2Findex%2Ephp%2Fphoto%2Fphoto%2Fslideshow%3FalbumId%3D2159940%253AAlbum%253A18362" class="xg_slideshow" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer"> </embed><br /><small><a href="http://unityinprayer.ning.com/photo/photo">Find more photos like this on <em>UNITY IN PRAYER</em></a></small><br /><div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0tag:blogger.com,1999:blog-8879215374590071789.post-18925039073554033042008-10-03T17:38:00.000-05:002008-11-30T17:42:50.718-06:00Prayers Answered! Start Neuropsyche Testing Right Away!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!
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Special Thanks! to everyone that emailed me prayers and scripture that got me through this difficult week!<div class="blogger-post-footer">THX</div>Musings of a Lupus Survivor!http://www.blogger.com/profile/18297214895158230761noreply@blogger.com0