New Neurologist: Anxiety turns Hopeful!

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

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

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

First Neuropsych Appointment Goes Well!

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

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

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

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

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

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

Week 2: 209 friends

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

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

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

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

Missing SSD Benefits: Mission Impossible?

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

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

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

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

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.

inches lost at the waist!

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