Benefits of not having Arnold Chiari Malformation... saggie is unattractive! Praise God, no saggie brains here!
Friday, June 27, 2008
Saggie is Unattractive
Benefits of not having Arnold Chiari Malformation... saggie is unattractive! Praise God, no saggie brains here!
Wednesday, June 25, 2008
Misdiagnosis!
Okay, this is getting really ridiculous but we have yet another misdiagnosis!
I had an MRI early this morning, saw the pictures myself with the radiologist and i do not have Arnold Chiari Malformation. I was really hoping this was it but now i guess we are dealing with tissue instead of bone. The radiologist suggested aneurysm but said it is not serious... although the digression of my health in this short time seems at least a little serious? But i digress.
At this point i am tired of diagnosis chasing. Only God knows what is wrong with me and He will heal me when He so chooses. The End.
... so i have decided that "Arnie" is now the entity of my dysfunction (whatever that may be). Mainly because it is easier to give "it" a name and it's too much work to change blog info!
Tuesday, June 24, 2008
Dizziness
Dizziness is a funny thing. It is like being on a roller coaster without the safety bar. As a dancer, i expect to be a bit dizzy after doing chaîné turns across the studio floor. However, when i am simply standing in place having a conversation, it is awkward trying to explain why all of a sudden i am hugging/leaning/pawing the wall/tree/person next to me.
The MRI shuffle makes me dizzy as well. I will have an appointment and it is moved up, then moved back, then there is hope for a sooner date and that falls through. I might possibly be having an evaluation and MRI in the morning... i just have a feeling we won't get to the MRI.
The MRI shuffle makes me dizzy as well. I will have an appointment and it is moved up, then moved back, then there is hope for a sooner date and that falls through. I might possibly be having an evaluation and MRI in the morning... i just have a feeling we won't get to the MRI.
Friday, June 20, 2008
The Waiting Game...
So three years of tests with no answers, one week of constant new information and now we wait... and wait... and... you get the idea.
So i've had wait until July 1st, since May 5th to see a neurologist all because of insurance. I called to have the effective date bumped up and found that i have Medicare 'A', but need Medicare 'B'. I filled out the proper paperwork and will have Medicare 'B'... when? You guessed it, July 1st. (Should have asked for Medicare 'Z' while i was at it!) I have a friend who was trying to get me a volunteer MRI today but that isn't working out. Bless her heart for trying so hard! Yet i have succumb to July 1st. It is apparent that God is giving me an opportunity to be patient and trust Him.
Wednesday was a toughie though! I was reading, then suddenly felt as though something exploded in my right temple close to my eye. It was as if tiny little fists were beating me into submission. The pain was bad, but my imagination was worse. Immediately my mind began to stretch and self diagnose tumors, aneurysms and the like. Ya, i'm silly, i know. As humans, the unknown scares us and we either search for answers or avoid the unknown, and since my head is kind of attached...
I had three men come to my rescue Wednesday night. The first talked me down from hysteria, the second helped me laugh it off and the third brought me Tylenol. It was all perfectly timed as well. A few moments after i got off the phone with the first, the second called. As i was hanging up with the second, the third was at my door with drugs! With people like like this around me i could wait forev.... lets be realistic here!... until July 1st!
So i've had wait until July 1st, since May 5th to see a neurologist all because of insurance. I called to have the effective date bumped up and found that i have Medicare 'A', but need Medicare 'B'. I filled out the proper paperwork and will have Medicare 'B'... when? You guessed it, July 1st. (Should have asked for Medicare 'Z' while i was at it!) I have a friend who was trying to get me a volunteer MRI today but that isn't working out. Bless her heart for trying so hard! Yet i have succumb to July 1st. It is apparent that God is giving me an opportunity to be patient and trust Him.
Wednesday was a toughie though! I was reading, then suddenly felt as though something exploded in my right temple close to my eye. It was as if tiny little fists were beating me into submission. The pain was bad, but my imagination was worse. Immediately my mind began to stretch and self diagnose tumors, aneurysms and the like. Ya, i'm silly, i know. As humans, the unknown scares us and we either search for answers or avoid the unknown, and since my head is kind of attached...
I had three men come to my rescue Wednesday night. The first talked me down from hysteria, the second helped me laugh it off and the third brought me Tylenol. It was all perfectly timed as well. A few moments after i got off the phone with the first, the second called. As i was hanging up with the second, the third was at my door with drugs! With people like like this around me i could wait forev.... lets be realistic here!... until July 1st!
Wednesday, June 18, 2008
Forced to Smell the Roses
I am stubborn. I am just now realizing this. I mean it's clear that my will is stronger than my body but now my will is beginning to outrun my scooter as well. Yes it's true, Miss Blueberry also as Arnold Chiari Malformation!
Okay not really, I'm just overworking her. There is a sweet little dial that has a tortoise at the bottom and a hare on the top. So apparently the moral of that story did not sink in with me. I have the dial cranked past the hare and the pedal to the metal. Miss Blueberry has had enough and has begun to jerk at full speed. So instead of speeding around at a whopping 4 mph, I've taken it down to about half speed.
I do definitely noticed more, especially the people who stare at me. And at 2 mph I have more time to smile at them and say hello, hopefully reminding them that there is a person behind all the machinery. It has been interesting noticing that, since I've been in a scooter people see me more, but then again they see me less. They stare, but do not say anything to me. They pick up speed to get to the door before me and then let the door shut behind them. And I can't tell you how many times I've been cut in front of in line. Some people even want to play 'chicken' with me! I mean really, if you're power walking you are maybe going 2 1/2 to 3 mph। If I'm going 4 mph and at knee level who do you think will win that game? ;-)
But seriously, at my new elevation I see the best and the worst of people. I see the girl that cuts me off, causing me to run my scooter into the wall lest I hit her. Yet I also see the man that, when I have high centered the scooter, totally stops to give me the 'lift and push'. I see how self-centered and self-absorbed humanity has become, and I also see that there is still hope.
Sunday, June 15, 2008
Thrive v.s. Survive
So i was talking with a good friend of mine about surviving through crazy trials. He suggested thriving instead. I didn't know what that looked like with Arnie in the picture... so i looked up the definitions. Here they are for your viewing pleasure. I've added my own comments in red.
survive |sərˈvīv|
verb [ intrans. ]
continue to live or exist, esp. in spite of danger or hardship :
• [ trans. ] continue to live or exist in spite of (an accident or ordeal) : he has survived several assassination attempts.
• [ trans. ] remain alive after the death of (a particular person) : he was survived by his wife and six children | [as adj. ] ( surviving) there were no surviving relatives.
• [ intrans. ] manage to keep going in difficult circumstances : she had to work day and night and survive on two hours sleep.
ORIGIN late Middle English : from Old French sourvivre, from Latin supervivere, from super- ‘in addition’ + vivere ‘live.’ Not super encouraging, right?
↴
thrive |θrīv|
verb
(of a child, animal, or plant) grow or develop well or vigorously (amidst trials?) : the new baby thrived.
• prosper; flourish : education groups thrive on organization | [as adj. ] (thriving) a thriving economy.
ORIGIN Middle English (originally in the sense [grow (in Christ), increase (in faith)] This is supernatural!) : from Old Norse thrífask, reflexive of thrífa ‘grasp, get hold of.’ Compare with thrift.
thrift |θrift|
noun
2 a European plant that forms low-growing tufts of slender leaves with rounded pink flowerheads, growing (thriving) chiefly on sea cliffs. A beautiful mess hanging off the edge of a cliff as waves crash in below. Who grows on the edge of a cliff?! ;-)
Also called sea pink . • Armeria maritima, family Plumbaginaceae.
ORIGIN Middle English (in the sense [prosperity, acquired wealth, success] ): from Old Norse, from thrífa ‘grasp, get hold of.’ Compare with thrive.
survive |sərˈvīv|
verb [ intrans. ]
continue to live or exist, esp. in spite of danger or hardship :
• [ trans. ] continue to live or exist in spite of (an accident or ordeal) : he has survived several assassination attempts.
• [ trans. ] remain alive after the death of (a particular person) : he was survived by his wife and six children | [as adj. ] ( surviving) there were no surviving relatives.
• [ intrans. ] manage to keep going in difficult circumstances : she had to work day and night and survive on two hours sleep.
ORIGIN late Middle English : from Old French sourvivre, from Latin supervivere, from super- ‘in addition’ + vivere ‘live.’ Not super encouraging, right?
↴
thrive |θrīv|
verb
(of a child, animal, or plant) grow or develop well or vigorously (amidst trials?) : the new baby thrived.
• prosper; flourish : education groups thrive on organization | [as adj. ] (thriving) a thriving economy.
ORIGIN Middle English (originally in the sense [grow (in Christ), increase (in faith)] This is supernatural!) : from Old Norse thrífask, reflexive of thrífa ‘grasp, get hold of.’ Compare with thrift.
thrift |θrift|
noun
2 a European plant that forms low-growing tufts of slender leaves with rounded pink flowerheads, growing (thriving) chiefly on sea cliffs. A beautiful mess hanging off the edge of a cliff as waves crash in below. Who grows on the edge of a cliff?! ;-)
Also called sea pink . • Armeria maritima, family Plumbaginaceae.
ORIGIN Middle English (in the sense [prosperity, acquired wealth, success] ): from Old Norse, from thrífa ‘grasp, get hold of.’ Compare with thrive.
"Coincidence"
So today has been a crazy day beginning at 6:30am as i got ready for church. BTW, this blog is primarily to chronicle my life with Arnie, however for my non-Christian friends and readers; there will be references to Jesus and God as He is the foundation of which i stand. Without Him, i would be a hot mess. But anyway, i digress. I met this girl who joined us for the first time this morning. It just so happens that she is a doctor, studying neurology at UCLA, from Harvard (yes, the Harvard) by way if Iran! She is specializing in autism, which i don't have, but wicked cool that she is connected in the exact place that i will be having my testing! We had a long talk after she gave her life to Christ after service (a whole other story in its self!) and she said she'd help in any way she could. Being friends with some one who knows the head of neurology of the place you might have brain surgery... priceless!
Another awesome tid-bit... For lunch, a group of us went to the beach and i realized as i was leaving that i probably walked over a mile today! And some of that in sand! After a week of being unable to walk in early May, i've been s l o w l y regaining strength. Before today, the furthest i could make it was to the parking lot!
What an awesome day with Arnie! From something as small as walking, to something as huge as salvation! Wholy crap!
Another awesome tid-bit... For lunch, a group of us went to the beach and i realized as i was leaving that i probably walked over a mile today! And some of that in sand! After a week of being unable to walk in early May, i've been s l o w l y regaining strength. Before today, the furthest i could make it was to the parking lot!
What an awesome day with Arnie! From something as small as walking, to something as huge as salvation! Wholy crap!
Saturday, June 14, 2008
CNS, ACM, CSF, PNS? I love Biology!
Welcome to Thriving with Arnie. I've basically started this blog because my current situation is constantly changing and being updated. So as to avoid annoying my friends with endless 14k e-mails... uh ... don't know how to finish this sentence, i blame brain compression (that will become funny if you read on and have a sense of humor). Also I took the summer off for some R&R and it's backfiring. Apparently two days is about all the R&R I can handle before I start losing my mind. Speaking of losing my mind, I am suspected to have, Arnold Chiari Malformation (ACM). It consists of a downward displacement of the cerebellar tonsils and the medulla through t
he foramen magnum, sometimes causing hydrocephalus as a result of obstruction of Cerebral Spinal Fluid (CSF) outflow. In layman's terms, I am so smart that my skull cannot contain my brain.
There is about three years of back story leading up to this discovery that I will try and sum up as brief as possible. Three years ago (around the same time I came to Christ) I was a bartender and began to have pain in my left wrist, reminiscent of Carpal Tunnel Syndrome. In all of my grand wisdom, I decided to get a brace and work through it. The pain then began in my right wrist and by January 2006, I was unable to use either of my hands. The pain grew into my elbows and pretty soon from my biceps down, I had pain. Yada, yada, yada (a Seinfeld phrase used to skip potentially important details for the sake of time), through acupuncture and physical therapy there was some improvement, however; by May 2008 the pain had spread to my feet and I couldn't walk.
July of 2007 I had a migraine that lasted about six days and my doctor ordered an MRI of my brain. The actual MRI took place on February 10, 2008 and I got the results May 4, 2008; a true testament to the efficiency of our medical system. My MRI report showed flow voids in the right side of the base of the skull (which is vague - cerebellum, medulla, inside, outside... details!), asymmetric compared to the left. This basically means that they could not detect the flow of CSF or blood going to that part of the brain. The MRI couldn't be enhanced to get a better look so I'll be seeing a neurologist at UCLA Med to get a CT scan. Unfortunately they don't take Medi-cal and my Medicare won't be valid until July 1st -- but that's a whole other story in itself! Dispite the nature of this news I am relieved that we are actually on to something! Three years of sporadic pain, not knowing the source of it, is extremely trying. It is slightly unnerving knowing it is the part of the body that we know the least about, but cool that it forces me to rest in God and not my own "understanding". I'm a bit of a control freak, so we'll see how that works out ;-D
Feel free to write or comment... about anything really. This past week has probably been the longest week of my life, waiting for my first neurological appointment on July 1st. I still have two weeks to go! I'm planning on crashing dance classes next week to help keep my mind off of things. It will be interesting to see the looks on the faces as I roll up to dance class in my scooter, Miss Blueberry. It is hard to explain that my Peripheral Nervous System is just as confused as they are!
he foramen magnum, sometimes causing hydrocephalus as a result of obstruction of Cerebral Spinal Fluid (CSF) outflow. In layman's terms, I am so smart that my skull cannot contain my brain.There is about three years of back story leading up to this discovery that I will try and sum up as brief as possible. Three years ago (around the same time I came to Christ) I was a bartender and began to have pain in my left wrist, reminiscent of Carpal Tunnel Syndrome. In all of my grand wisdom, I decided to get a brace and work through it. The pain then began in my right wrist and by January 2006, I was unable to use either of my hands. The pain grew into my elbows and pretty soon from my biceps down, I had pain. Yada, yada, yada (a Seinfeld phrase used to skip potentially important details for the sake of time), through acupuncture and physical therapy there was some improvement, however; by May 2008 the pain had spread to my feet and I couldn't walk.
July of 2007 I had a migraine that lasted about six days and my doctor ordered an MRI of my brain. The actual MRI took place on February 10, 2008 and I got the results May 4, 2008; a true testament to the efficiency of our medical system. My MRI report showed flow voids in the right side of the base of the skull (which is vague - cerebellum, medulla, inside, outside... details!), asymmetric compared to the left. This basically means that they could not detect the flow of CSF or blood going to that part of the brain. The MRI couldn't be enhanced to get a better look so I'll be seeing a neurologist at UCLA Med to get a CT scan. Unfortunately they don't take Medi-cal and my Medicare won't be valid until July 1st -- but that's a whole other story in itself! Dispite the nature of this news I am relieved that we are actually on to something! Three years of sporadic pain, not knowing the source of it, is extremely trying. It is slightly unnerving knowing it is the part of the body that we know the least about, but cool that it forces me to rest in God and not my own "understanding". I'm a bit of a control freak, so we'll see how that works out ;-D
Feel free to write or comment... about anything really. This past week has probably been the longest week of my life, waiting for my first neurological appointment on July 1st. I still have two weeks to go! I'm planning on crashing dance classes next week to help keep my mind off of things. It will be interesting to see the looks on the faces as I roll up to dance class in my scooter, Miss Blueberry. It is hard to explain that my Peripheral Nervous System is just as confused as they are!
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