A lupus survivor's cerebrations on living day to day...

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    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.

     National Invisible Chronic Illness Awareness WeekIts 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!

     

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