Tuesday, January 24, 2012
something inside sang this to me, ijust wrote it down...
runnin time, runnin time, runnin on sorrow
runnin time. runnin time. runnin on borrowed time
with a tortured soul,a shattered heart and a brain that just can't keep up
you all move on without me, ..... and i say go on go,i'll be the one to stay
you all leave before me, .....and i say go on go,i'll take all your pain,
just has long as you are fine,just as long as you arrive
so i stand in line and wait my time and try hard to make the time pass by
so i stand in line and wait my time as life just passes me by
i learned real well to wait for life since about the age of three
you may see the glass half empty,i see it's still half full
i carry it more gentle now and take care not to let it fall,
when yours is running out i will set mine aside to hold you gently as i say
goodbye
cuz i know someday i'll see you again,i'll see you on the other side
as i pick up the glass one more time i can see it's evaporating
yes i admit some times i find it exasperating,then i remember
with his love is how i do it
someday when they cut me open maybe they will see
the scars that hide
while they have me under their looking glass
maybe they will read my mind,if they do,
i pray they take their time to see the truth's inside of me
then publish them for all to see
that the daggers words written in my blood were not written by me
but by many intruders and cowards who ran and pointed the blame at me
that every time the stones were thrown i took the hand God offered me
to stand again to face another, to walk with Jesus under cloak of night
to a place of rest and healing and yes at times he has carried me
(a short time ago i woke with music in my head, these words followed it out of me. i have made slight changes,as parts were inaudible to me at the time so i set it aside till now. i'm posting it now because even tho it's not spit and polished or pretty. it is a part of me i don't want set aside and forgotten! hopefully someone will understand it's meaning and know them self a bit better)
Thursday, January 12, 2012
ARE YOU SICK OR IS IT A JOKE?
someone asked me yesterday 'are you sick or is it a joke?' maybe it's my own fault that someone would feel the need to ask me such a question. maybe i have not explained enough. maybe i have not complained enough. maybe i've become too good at hiding it. maybe i should say more about what i live with everyday,because maybe they think i'm looking for personal attention. maybe they think if all i have said about my disease were true that i should be in a nursing home unable to function think or speak. truth is by all accounts...i should be.
i need to live in a controlled environment as i have sensitivities to temperature,light and sound, which are due to brain damage caused by numerous ischemic strokes which have deprived approximately half of my brain of blood and oxygen in progression with each of these strokes over the last 19 years at which time i had my 1 and only hemorrhagic stroke aka brain bleed. i was working out with weights at a gym at the time. after about a year of numerous tests i was told i had lyme disease and the brain bleed was most likely a one time vascular event. i was told i could not donate blood or organs after having lyme disease and that it would be best not to have another child as i may not carry to term or if i did i and the baby would be at high risk of death during delivery. i was also diagnosed with hypertention which had started a few months before the brain bleed,also that i now had fibromyalgia and could end up in a wheel chair within 10 years (i am at 18 yrs. and still walking with the use of a rolator walker for 2 years now).
i am an asthmatic with many allergies,have been since early childhood, migraines since i was 19,i have chronic lyme disease,arthritis throughout my body,degenerative disc/joint disease including 3 sections of my spine-1 being my neck,i have gerd, ibs, PTSD, vertigo,high cholesterol, low potassium and vitamin d,essential tremors and uncontrolled muscle movements (which sometimes resemble cerebral palsy),i have sleep disturbances and altered states of consciousness from MOYAMOYA DISEASE which i was finally properly diagnosed with in december of 2008 and has been the cause of the blockages in my blood vessels and arteries in my brain,plus the small defective new blood vessels which grow after a blockage in an attempt to supply the brain with blood and oxygen,however with MOYAMOYA DISEASE they grow skinny and tangled leaving with looks like a puff of smoke on a brain angiogram. also,with most of these illnesses and symptoms comes pain.
almost every single moment there is pain somewhere in your body... you can adjust to pain after living with it for a while, but as the illnesses add up so does the pain,you readjust your pain level again,and again,and again. you can get to the point where it's normal to have a pain level of 5 and not consciously be aware of it it;s like playing cards you can have three 5's and adjust,meaning 3 areas throughout your body with a pain level of 5 all at the same time,but then you make the simplest move or stay still for too long and suddenly pain levels start spiking. it can be as simple as one spot goes up to an 8 or each of the 3 spots go up to an 8 OR you may suddenly go from pain in the tops of your feet at a five jump to a level 8 and extend from your toes to your hips with it feeling as though someone is stretching and pulling all your veins,tendons and arteries out of your legs thru the tips of your toes. pain,tremors,uncontrolled muscle movements,vision problems.lost time episodes and more all being controlled by a brain that no longer has normal active transmission of signals to you body or even your mouth for normal speech or thought. have you ever been in the middle of a sentence and not only forget what you were saying but suddenly feel like your brain has in an instant gone from turning clockwise to suddenly turning counter clockwise,it's as if your brain is suddenly weightless and adrift or have you ever been driving and hit black ice and totally lost control of your car and its all in fast motion then suddenly the car stops and it all turns to slow motion. that is what it's like,but it is the sensation of your brain moving out of control and an instance of not knowing which end is up.then your brain suddenly has no sense of direction or coherency,your brain and your body become totally unsynchronized and confused or leaving you lethargic and sometimes in a slumped stare. which i can sense i am headed for right now,so i need to stop for today. #MOYAMOYADISEASE
i need to live in a controlled environment as i have sensitivities to temperature,light and sound, which are due to brain damage caused by numerous ischemic strokes which have deprived approximately half of my brain of blood and oxygen in progression with each of these strokes over the last 19 years at which time i had my 1 and only hemorrhagic stroke aka brain bleed. i was working out with weights at a gym at the time. after about a year of numerous tests i was told i had lyme disease and the brain bleed was most likely a one time vascular event. i was told i could not donate blood or organs after having lyme disease and that it would be best not to have another child as i may not carry to term or if i did i and the baby would be at high risk of death during delivery. i was also diagnosed with hypertention which had started a few months before the brain bleed,also that i now had fibromyalgia and could end up in a wheel chair within 10 years (i am at 18 yrs. and still walking with the use of a rolator walker for 2 years now).
i am an asthmatic with many allergies,have been since early childhood, migraines since i was 19,i have chronic lyme disease,arthritis throughout my body,degenerative disc/joint disease including 3 sections of my spine-1 being my neck,i have gerd, ibs, PTSD, vertigo,high cholesterol, low potassium and vitamin d,essential tremors and uncontrolled muscle movements (which sometimes resemble cerebral palsy),i have sleep disturbances and altered states of consciousness from MOYAMOYA DISEASE which i was finally properly diagnosed with in december of 2008 and has been the cause of the blockages in my blood vessels and arteries in my brain,plus the small defective new blood vessels which grow after a blockage in an attempt to supply the brain with blood and oxygen,however with MOYAMOYA DISEASE they grow skinny and tangled leaving with looks like a puff of smoke on a brain angiogram. also,with most of these illnesses and symptoms comes pain.
almost every single moment there is pain somewhere in your body... you can adjust to pain after living with it for a while, but as the illnesses add up so does the pain,you readjust your pain level again,and again,and again. you can get to the point where it's normal to have a pain level of 5 and not consciously be aware of it it;s like playing cards you can have three 5's and adjust,meaning 3 areas throughout your body with a pain level of 5 all at the same time,but then you make the simplest move or stay still for too long and suddenly pain levels start spiking. it can be as simple as one spot goes up to an 8 or each of the 3 spots go up to an 8 OR you may suddenly go from pain in the tops of your feet at a five jump to a level 8 and extend from your toes to your hips with it feeling as though someone is stretching and pulling all your veins,tendons and arteries out of your legs thru the tips of your toes. pain,tremors,uncontrolled muscle movements,vision problems.lost time episodes and more all being controlled by a brain that no longer has normal active transmission of signals to you body or even your mouth for normal speech or thought. have you ever been in the middle of a sentence and not only forget what you were saying but suddenly feel like your brain has in an instant gone from turning clockwise to suddenly turning counter clockwise,it's as if your brain is suddenly weightless and adrift or have you ever been driving and hit black ice and totally lost control of your car and its all in fast motion then suddenly the car stops and it all turns to slow motion. that is what it's like,but it is the sensation of your brain moving out of control and an instance of not knowing which end is up.then your brain suddenly has no sense of direction or coherency,your brain and your body become totally unsynchronized and confused or leaving you lethargic and sometimes in a slumped stare. which i can sense i am headed for right now,so i need to stop for today. #MOYAMOYADISEASE
Tuesday, January 3, 2012
the life of my brother mark...
mark was delightful,heartfelt,empathetic,bright,funny,handsome,talented,artistic,gifted. one Christmas he decided we needed a fireplace to hang the stockings from,so he made one from cardboard. he painted it to look as if it were made of red bricks,made a fake log fire with standing flames also made of cardboard ans colored yellow then a red nightlight placed between the fake logs and flames.it even had the set of the objects that stands in front holding the poker and broom. it was really quite amazing and yes it even held the stockings when the were filled.
he also taught me how to wrap presents with multiple papers, making different angles cross the boxes and how to make bows of different shapes and sizes,how to lay ribbon to follow and hide the seam of the different papers,how to weave the ribbon pieces into different patterns to frame the bows and take old Christmas cards and cut them into gift cards or little standing figures into little scenes.
for halloween he wood make a spook house in what was called the L-barn. he wood hang masks on the walls with flashlights shining upward under their chins,brooms were placed into holes in the floor and dressed in scary costumes and from below him would push them up through the floor to scare us when we got near (and there were plenty of holes so he could change the room between tours). there were boards balanced so you would walk up till it tipped straight ad then walk down the other side. he would charge us a penny each time we went through and when we ran out he would give them back so we could do it all over again. he had just has much fun recreating it for us as we did being surprised every time.
mark somehow new at a very young age that farming would not be his lifes work,he started singing solos at school,performing the supporting role of freddy in my fair lady when he was 13 and singing at weddings while still a boy soprano. at 15 he went on to join THE KIDS FROM WISCONSIN,which included being the opening act at the state fair grandstand for such acts as SONNY+CHER,PAUL REVERE AND THE RAIDERS,CREEDENCE CLEARWATER REVIVAL,RED SKELTON AND MORE, during the school year he would also perform at waukesha civic theater. he was the first male cheerleader in mukwonago schools history and also the first male gymnast. after high school he went on to THE BROTHERS AND SISTERS touring and performing at places like DISNEY WORLD,plays in milwaukee at center stage dinner theater and a tent theater of which i cannot recall the name,i want to say the carousel tho i'm just not clear on that.
then he was off to chicago for a while,then LAS VEGAS at the LIDO,from there it was on to PARIS to perform at THE LIDO DE PARIS with SHIRLEY MACLAINE. after which worked on a NORWEGIAN cruise line on THE ROYAL VIKING SEA an elite cruise ship that cruised completely around the world...passengers could travel part of the trip or all. i believe it was after this that he got his favorite job of all,TOURING WITH THE LOVELY AND TALENTED MITZI GAYNOR she treated 'her boys' like family. MS. GAYNOR note and flowers for our mothers funeral in 1987 just months after we had seen the show in milwaukee.
i had just gotten married a few months before mom died of cancer,then in 1989 i was finally able to get pregnant,that thanksgiving mark was home...we were all at dads for thanksgiving dinner,mark got up from the table and picked up an old heavy wooden cutting board we had had forever.but, this time as mark picked it up with one hand,from next to the stove,it broke and the largest piece swung down and caught him in the arm causing him to bleed. there was much commotion happening at the table with everyone talking and finishing the meal. somehow, even though he was just 3 feet away,i was the only one who saw marks reaction when he saw the blood running down his arm or to see him place the cutting board in the sink and to hear him say 'NO ONE TOUCH THE CUTTING BOARD IT HAS BLOOD ON IT. it was a surreal moment,it felt as though mark and i were suddenly moving at a different pace from everyone else. they were at normal speed and sound totally unaware anything had happened...while he and i seemed to be slowing down and speeding up,each at our own pace...it was all out of sync.
i got up from the table and immediately poured straight bleach on the cutting board in the sink making sure not to touch it.i then went to mark and told him what i had done...and asked if i could help him, he said NO. he was quite upset and kept saying how stupid it was for him to break the board that way.
it's late,i'm very tired and have an appointment here in the morning...i will try to continue this tomorrow if i'm able...
he also taught me how to wrap presents with multiple papers, making different angles cross the boxes and how to make bows of different shapes and sizes,how to lay ribbon to follow and hide the seam of the different papers,how to weave the ribbon pieces into different patterns to frame the bows and take old Christmas cards and cut them into gift cards or little standing figures into little scenes.
for halloween he wood make a spook house in what was called the L-barn. he wood hang masks on the walls with flashlights shining upward under their chins,brooms were placed into holes in the floor and dressed in scary costumes and from below him would push them up through the floor to scare us when we got near (and there were plenty of holes so he could change the room between tours). there were boards balanced so you would walk up till it tipped straight ad then walk down the other side. he would charge us a penny each time we went through and when we ran out he would give them back so we could do it all over again. he had just has much fun recreating it for us as we did being surprised every time.
mark somehow new at a very young age that farming would not be his lifes work,he started singing solos at school,performing the supporting role of freddy in my fair lady when he was 13 and singing at weddings while still a boy soprano. at 15 he went on to join THE KIDS FROM WISCONSIN,which included being the opening act at the state fair grandstand for such acts as SONNY+CHER,PAUL REVERE AND THE RAIDERS,CREEDENCE CLEARWATER REVIVAL,RED SKELTON AND MORE, during the school year he would also perform at waukesha civic theater. he was the first male cheerleader in mukwonago schools history and also the first male gymnast. after high school he went on to THE BROTHERS AND SISTERS touring and performing at places like DISNEY WORLD,plays in milwaukee at center stage dinner theater and a tent theater of which i cannot recall the name,i want to say the carousel tho i'm just not clear on that.
then he was off to chicago for a while,then LAS VEGAS at the LIDO,from there it was on to PARIS to perform at THE LIDO DE PARIS with SHIRLEY MACLAINE. after which worked on a NORWEGIAN cruise line on THE ROYAL VIKING SEA an elite cruise ship that cruised completely around the world...passengers could travel part of the trip or all. i believe it was after this that he got his favorite job of all,TOURING WITH THE LOVELY AND TALENTED MITZI GAYNOR she treated 'her boys' like family. MS. GAYNOR note and flowers for our mothers funeral in 1987 just months after we had seen the show in milwaukee.
i had just gotten married a few months before mom died of cancer,then in 1989 i was finally able to get pregnant,that thanksgiving mark was home...we were all at dads for thanksgiving dinner,mark got up from the table and picked up an old heavy wooden cutting board we had had forever.but, this time as mark picked it up with one hand,from next to the stove,it broke and the largest piece swung down and caught him in the arm causing him to bleed. there was much commotion happening at the table with everyone talking and finishing the meal. somehow, even though he was just 3 feet away,i was the only one who saw marks reaction when he saw the blood running down his arm or to see him place the cutting board in the sink and to hear him say 'NO ONE TOUCH THE CUTTING BOARD IT HAS BLOOD ON IT. it was a surreal moment,it felt as though mark and i were suddenly moving at a different pace from everyone else. they were at normal speed and sound totally unaware anything had happened...while he and i seemed to be slowing down and speeding up,each at our own pace...it was all out of sync.
i got up from the table and immediately poured straight bleach on the cutting board in the sink making sure not to touch it.i then went to mark and told him what i had done...and asked if i could help him, he said NO. he was quite upset and kept saying how stupid it was for him to break the board that way.
it's late,i'm very tired and have an appointment here in the morning...i will try to continue this tomorrow if i'm able...
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