I barely made it up the stairs to the security of my bed before I gave in to paralysis and another "seizurific" evening began. Pushing myself to the max mentally and physically all week gave opportunity for another urinary tract infection. Cramps, chills and sweat ... Me to get up at 4 am to discover 101 degree fever, my 4th over past few months. Good sense says . Azo tablets, cranberries and water aren't enough you must go to doctor this time for an antibiotic. A sickening weight of anxiety attack was creeping upon me as I strained to construct each step necessary in pursuit of prescription. My brain was still malfunctioning unable to think or talk or move. I would have to get through navigating menus and holding for assistance in series of phone calls. First beg my Internist's office to work in an appointment on short notice. Next hope the Insurance will overlook the 3 day notice required to cover medical transportation cost. Last of all hope MatAplus has opening left for pickup tomorrow. Worst of all would be the long wait at doctors office. then i began to worry about yesterday's unexpected $55 copay. I was so disconbobulated when I left office that was feeling totally unsure of what i was to do next appointment. What was it for? Can i afford it? Was i supposed to call insurance or the neurologist first. I had that familiar but frightening blankness. With my neurology off and "balloon head" aura upon me, i couldn't think out anything this morning. I lay in bed stuck, lost and overwhelmed by all my unfiltered thoughts tiny and great until my PT rang the doorbell breaking my "spell." Thank God, she saved my day, having nurse come to my home for urinalysis, saving me calls and trip to doctor. A walk and talk with PT help give me enough sense to postpone next tuesday's neuropsychiatrist appointment until after an appointment with my medical couselor/ psychologist.
Halved my size
replace material with spiritual
renee, you blessed me so much with your message. connie was right to encourage you to share ti. and it was so nice to hear your voice. this morning i was coming to my own realizations about my life circumstance. i told my therapist that i am thinking of my life in a whole new paradym. ive been thinking if only i cold restore everything the way it was id get better. in my case, i thought getting new floors from flood damage and repairing all the stuff around here from 3 years of not being able to work. just when i got some extra cash thinking id fix up, my income was reduced even more from lack of child support. thats just the recent events. bottomline its been 2 years of failed attempts to restore this house. its seems that at the same time you were, i was also realizing maybe i just need to let go of my house. even with child support its 2/3 of my income. when my son turns 18 most of my income will be gone. so far i havent missed any house notes. i began objectively accepting worse case scenarios. decided to do what i can to keep phone/dsl, if anything goes first let it be electectircty. we have had plenty experience without power. got lanterns/coolers last summer when cut off over week. like you said, my pride had me worrying about what people even church folk would say to my lights out. but god knows ive done my best with what i have. i doubt many could live a week the way we have. but you said what most important, our spirit, our loved ones. my son told me he didnt care about keeping the house for his sake. he and i have been living in my bedroom since my illness anyway. so that means we only use about 200sf out of 2000. im hoping my son will attend college stay on campus. all i need is an efficency. he can sleep on the end of the bed or the floor to visit. i already have mini fridge/ microwave upstairs. since i began thinking like this and shut out the rest of the house and its problems, i have felt relieved. all year ive been wanting someone to come help me organize my stuff. now im like thinki ng of just keeping my pictures and keepsakes, and leaving everything else behind me. i havent made any decisions, or taken any actions, but just mentally letting go of the material things ive been trying to maintain or replace has been like a burden lifted. i actually opened my utilty bill, read $456 sat it down and went to bed last night. just last month, i would have went into anxiety attack and worry mode. not sleepping, barely eating until id made myself even sicker. hearing your testimony of letting go, really confirmed my faith and strenghthen my new attitude about whats important. instead of shame over idea of losing my possessions, you expressed so well that i should feel stronger as i replace material with spiritual. god bless
Blessed & Busy: Ordered steps lead to "Lupus Survivor Stories Blidget"
ive been stretched so far the past weeks. but thank god to be exhausted from actually accomplishing something as opposed to just being tired and weary from pain and worry. altho many of my health and financial problems still exist for once i have some promising things in the works. i can feel the physical benefits of pt. my first week of neuropsych tests went well. my med couselor found some potentially free or reduced legal aid. your prayers for me are coming to fruition. sorry i didnt follow up on my "spread the word" campaign last week. i barely found time for much between daily healthcare appts. my myspace blog has my most all day to day updates/journal ...too difficult to put updates on all the social networks i belong these days. i had such wonderful results recruiting new friends on myspace and facebook. reading so many inspiring stories led me to decide to collect them for lupus awareness. i developed a blidget or blogging widget called "Lupus Survivor's Stories" to highlight the life-threatening aspect of lupus. i know many of you have lupus or know someone who has had their life threatened by lupus...or maybe even lost a loved one. im including the request ive made on myspace and facebook, hoping some fellow lpus survivors will take time to share their stories. even when im too tired to post, i try to to surf thru and see what my friends are upto. be assured you all are apart of my daily prayers. angie The steps of a good man [woman] are ordered by the LORD: and he delighteth in his way! Psalm 37:23 (KJV)
Collecting Lupus Survivor Stories
My original focus for my blog Ardent Cerebrations: Musings of a Lupus Survivor! was to provide information TO fellow lupus survivors. October is Lupus Awareness Month! Let's focus on increased awareness ABOUT lupus survivors for our own family & friends who often see us as isolated cases, often mistaking our complaints as our own personal idiosyncrasies. Hopefully presenting our stories with their parallel threads will dispel some misconceptions among our families and communities. Criteria for lupus survivors stories: Give brief anecdote illustrating one of following categories... 1. A life-threatening flare or life-threatening complications due to drugs or lupus 2. Death of loved one from lupus 3. Stories of life-threatening emergency led to diagnosis Stories featured on "Lupus Survivor Stories Blidget" More information and blidgets featured @ http://lupussurvivorstories.blogspot.com/ http://alupussurvivor.blogspot.com/ http://www.myspace.com/alupussurvivor Contact me @ mailto:cerebrations4u@aol.com
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.
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About Me
- Musings of a Lupus Survivor!
- As The Survivor of surviving a chronic invisible illness, I share "The Musings" on my life, mind, body & spirit.
