Every day is an opportunity to learn. Sometimes we take advantage of that opportunity. And, sometimes we don't even notice that we did.
In the last 32 years, I've learned a LOT, though I didn't always realize it. I'm going to strive to pay more attention to what happens to me each day, in the hopes that I will notice how much more I'm learning.
Some of the things I've learned...
There are still good people in this world, that care more about others and less about themselves.
Sometimes, having someone to just "be" there for you is more important than what they can "do" or "buy" for you. By all means, appreciate what people "do" for you, but help them realize that it's not the "doing for" that means anything to you, it's the "being there."
No matter how much you think you've "survived" an experience (good or bad) in your life, it still affects you. And the longer you ignore how you really feel about it, the harder it is to get past. And if you continue to ignore it, overcoming may become impossible.
Sometimes things that happen to you SCARE you. And, no matter how belittled others make you feel about the fact that you're SCARED, you still have every right to have that panic attack.
It's okay to be angry. Just remember to direct the anger to the right place.
Crying can be cleansing. It's okay if you need to sit down and quietly let tears fall. It's okay if you need to ball up and sob. Either way, let those tears wash away the pain or fear or anxiety or anger, or whatever else emotion, you are feeling.
The best of intentions do not guarantee success.
Trust, once destroyed, is not easily repaired.
Jealousy will eat you alive, almost literally.
Social Media is good.
Social Media is bad.
What did you learn today?
Sunday, October 5, 2014
Friday, October 3, 2014
Social Media as a Clothesline
social media
n. websites and other online means of communication that are used by large groups of people to share information and to develop social and professional contacts.
clothesline
n. a strong, narrow rope, cord, wire, etc., usually stretched between two poles, posts, or buildings, on which clean laundry is hung to dry.
emphasis
n. special stress laid upon, or importance attached to, anything.
In the definition of the word, clothesline, above, using bold, highlighted, italics, I have placed emphasis on the word clean.
Many of us use our social media outlets - to include blogs like this one! - to express our feelings (both good and bad) about certain topics. We do this in a multitude of ways.
Perhaps it is a rant posted in haste as a tweet on Twitter or a status on Facebook.
Perhaps it is our opinion of Adam Levine's blond hair; or our glee when he went back to dark hair.
Perhaps it is our thoughts on the results we got on one of those silly quizzes.
Perhaps we share links to posts, articles and blogs that we find relatable.(I recently did this, and I can't figure out how to link to just that post on Facebook, but I think I'm going to blog that one because it still seems important to me, even now, so watch for that post.)
Perhaps we share memes that are meaningful to us or relative to our relationships or emotions.
And then, sometimes, we just get downright nasty. And that, my friends, is where I have a problem.
If you have a problem with someone, talk to that person. Or, if you don't think you can just yet (I know, sometimes you have to get to a "place" where you can talk to them out of love instead of hurt or anger...and sometimes that takes YEARS, and sometimes when that place comes, the thing you were so bent out of shape about doesn't even matter anymore), vent your frustrations to your spouse, mom, dad or best friend. But using social media to air your dirty laundry is a bad idea, all the way around. Some things just are meant for public viewing; everything has its place - like yoga pants.
You might use social media as a clothesline, but remember that clotheslines are intended for clean laundry.
n. websites and other online means of communication that are used by large groups of people to share information and to develop social and professional contacts.
clothesline
n. a strong, narrow rope, cord, wire, etc., usually stretched between two poles, posts, or buildings, on which clean laundry is hung to dry.
emphasis
n. special stress laid upon, or importance attached to, anything.
In the definition of the word, clothesline, above, using bold, highlighted, italics, I have placed emphasis on the word clean.
Many of us use our social media outlets - to include blogs like this one! - to express our feelings (both good and bad) about certain topics. We do this in a multitude of ways.
Perhaps it is a rant posted in haste as a tweet on Twitter or a status on Facebook.
Perhaps it is our opinion of Adam Levine's blond hair; or our glee when he went back to dark hair.
Perhaps it is our thoughts on the results we got on one of those silly quizzes.
Perhaps we share links to posts, articles and blogs that we find relatable.(I recently did this, and I can't figure out how to link to just that post on Facebook, but I think I'm going to blog that one because it still seems important to me, even now, so watch for that post.)
Perhaps we share memes that are meaningful to us or relative to our relationships or emotions.
And then, sometimes, we just get downright nasty. And that, my friends, is where I have a problem.
If you have a problem with someone, talk to that person. Or, if you don't think you can just yet (I know, sometimes you have to get to a "place" where you can talk to them out of love instead of hurt or anger...and sometimes that takes YEARS, and sometimes when that place comes, the thing you were so bent out of shape about doesn't even matter anymore), vent your frustrations to your spouse, mom, dad or best friend. But using social media to air your dirty laundry is a bad idea, all the way around. Some things just are meant for public viewing; everything has its place - like yoga pants.
You might use social media as a clothesline, but remember that clotheslines are intended for clean laundry.
Thursday, October 2, 2014
Adventures in Kindergarten - Month 1
Gentry Primary School. Ugh.
Buies Creek Elementary School. Yay!
But, how? Ahh...school reassignment request. APPROVED!
We finally got the approval that Levi would be accepted to Buies Creek Elementary School despite that it's outside of our home "district". We were so excited. He would be attending a good school.
We went to assessment in late August. NIGHTMARE. Levi rebelled. Badly. It was probably a sign. I ignored it.
School started on September 3 for Levi. He both loves and hates it. He hates that there's no free time & no center-based play. He loves learning and is truly learning a LOT despite his difficulty settling in.
So, we're a month into school now. He is doing better but still struggling a little to get used to the new routines. His progress report indicated he was right where they expect him to be ("M - Making progress towards grade-level proficiency"). His handwriting is improving, his reading skills are developing and he's intrigued by math. He still hates the routine. With time, I think he will adjust; OCD makes change hard for him.
Be in prayer for him as he continues on this journey.
"The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace." ~ Numbers 6:24-26
Buies Creek Elementary School. Yay!
But, how? Ahh...school reassignment request. APPROVED!
We finally got the approval that Levi would be accepted to Buies Creek Elementary School despite that it's outside of our home "district". We were so excited. He would be attending a good school.
We went to assessment in late August. NIGHTMARE. Levi rebelled. Badly. It was probably a sign. I ignored it.
School started on September 3 for Levi. He both loves and hates it. He hates that there's no free time & no center-based play. He loves learning and is truly learning a LOT despite his difficulty settling in.
So, we're a month into school now. He is doing better but still struggling a little to get used to the new routines. His progress report indicated he was right where they expect him to be ("M - Making progress towards grade-level proficiency"). His handwriting is improving, his reading skills are developing and he's intrigued by math. He still hates the routine. With time, I think he will adjust; OCD makes change hard for him.
Be in prayer for him as he continues on this journey.
"The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace." ~ Numbers 6:24-26
Friday, July 18, 2014
Eight Years
Eight years is a long time.
But I remember like it was yesterday.
It's about 1pm. I'm sitting in the stylist's chair at Diamond Cuts when it was still in that tiny building on Ramsey Street.
My phone rings. It's Amanda. She's upset.
"They found Keith dead this morning," she says.
"Tiffany?" I ask.
It brings ache to my soul to think that my very first thought was that the mother of his child was responsible.
But in the end, my gut instinct was right. Deadly accurate.
Eight years ago today, they found my husband's best friend, Donald Keith West, dead. From a gunshot wound sustained in his own home, in his own bed, while he slept peacefully.
More than 2 years later, Tiffany would plead guilty to second degree murder.
Keith's sister, my dear friend Rhonda, and her husband would go on to raise Keith's daughter, Lily Marie, who will turn 9 later this year.
Though time passes faster than we'd like, this day doesn't seem to get any easier.
Rest in Peace, Big Daddy.
In loving memory of Donald Keith West
July 30, 1966 - July 18, 2006
But I remember like it was yesterday.
It's about 1pm. I'm sitting in the stylist's chair at Diamond Cuts when it was still in that tiny building on Ramsey Street.
My phone rings. It's Amanda. She's upset.
"They found Keith dead this morning," she says.
"Tiffany?" I ask.
It brings ache to my soul to think that my very first thought was that the mother of his child was responsible.
But in the end, my gut instinct was right. Deadly accurate.
Eight years ago today, they found my husband's best friend, Donald Keith West, dead. From a gunshot wound sustained in his own home, in his own bed, while he slept peacefully.
More than 2 years later, Tiffany would plead guilty to second degree murder.
Keith's sister, my dear friend Rhonda, and her husband would go on to raise Keith's daughter, Lily Marie, who will turn 9 later this year.
Though time passes faster than we'd like, this day doesn't seem to get any easier.
Rest in Peace, Big Daddy.
In loving memory of Donald Keith West
July 30, 1966 - July 18, 2006
Wednesday, February 19, 2014
It's Been A While...
...since there was an update on the boy.
Levi just celebrated his FIFTH birthday!
He is full of personality. He is loving. He is smart...so very smart! He is funny. He is a trouble-maker. He is a heart breaker. He has these looks that just melt your heart. He has these sayings that just make you giggle...even when you should be scolding him. He is rude. He is a boy. He is OCD. He is determined.
He is perfect, well...he's is the perfect Levi Johnson Hall, anyway. :)
He is HEALTHY. Other than a flu shot in November, his 5-year well-check on February 11, 2014 was his FIRST visit at the pediatrician's office since his 4-year well-check on February 12, 2013. Previously, our record was 3 months between sick visits. It's been a YEAR. A whole YEAR. I'm excited...can you tell? We are still followed by Immunology and Pulmonology at Duke, and of course, he's had a cold here and there or an asthma flare-up, but we've been able to manage everything with NO ANTIBIOTICS and only 3 courses of STEROIDS. We have been very blessed.
He is such an old man.
He sits just like his Great Granddaddy ["Granddaddy" to him], with his little legs crossed at the knee, which makes my heart sing because Granddaddy loves him so and I think it's so special that he ended up with a trait from one of his great grandparents.
His eyes are beautiful. And weird. And they change colors. Blue. Gray. Green. Golden. Sometimes so deep they appear purple. And every now & then you catch a glimpse of just plain old brown. It fascinates me. And the color is telling...of his moods...if they're blue, get ready for a great big hug...if they're green be prepared for an apocalyptic zombie-like attack...if they're gray, prepare yourself to be licked up the side of your face or have him climb up in your lap just to pass gas on you and take off running or just generally be mischievous.
He doesn't understand personal space. It's perfectly acceptable to him to put his nose to your nose just to tell you hello. Or climb up in your lap, even if you're a perfect stranger.
He sneaks...like a ninja...out of his bed and into his daddy's & mine on a regular basis. We've timed it. It has taken up to 30 minutes for him to get out of bed, walk down the hall, climb onto the foot of our bed and inch his way up to the pillows between us. It's hard to pretend you're asleep so he doesn't know you've busted him when all you really want to do is belly laugh out loud. [I told you in the beginning he was determined!]
He says things like, "I'm not talking about at this moment. I mean, at the other moment. You know, when I was in the shower?" This moment...really, kid?! What happened to "a while ago" or "earlier" or "right now"?!
Anyway...enjoy these shots from our Mom-Tog moment...I didn't put my good friend Carrie Small out to do his 5-year old pics...yet. ;) I'm still trying to decide if I love these enough to use them, or if I'm gonna cave and take him to "Miss Carrie" after all..we shall see...
I sure do love you, kid...to the moon & back...to pieces...even more than that!
Levi just celebrated his FIFTH birthday!
He is full of personality. He is loving. He is smart...so very smart! He is funny. He is a trouble-maker. He is a heart breaker. He has these looks that just melt your heart. He has these sayings that just make you giggle...even when you should be scolding him. He is rude. He is a boy. He is OCD. He is determined.
He is perfect, well...he's is the perfect Levi Johnson Hall, anyway. :)
He is HEALTHY. Other than a flu shot in November, his 5-year well-check on February 11, 2014 was his FIRST visit at the pediatrician's office since his 4-year well-check on February 12, 2013. Previously, our record was 3 months between sick visits. It's been a YEAR. A whole YEAR. I'm excited...can you tell? We are still followed by Immunology and Pulmonology at Duke, and of course, he's had a cold here and there or an asthma flare-up, but we've been able to manage everything with NO ANTIBIOTICS and only 3 courses of STEROIDS. We have been very blessed.
He is such an old man.
He sits just like his Great Granddaddy ["Granddaddy" to him], with his little legs crossed at the knee, which makes my heart sing because Granddaddy loves him so and I think it's so special that he ended up with a trait from one of his great grandparents.
His eyes are beautiful. And weird. And they change colors. Blue. Gray. Green. Golden. Sometimes so deep they appear purple. And every now & then you catch a glimpse of just plain old brown. It fascinates me. And the color is telling...of his moods...if they're blue, get ready for a great big hug...if they're green be prepared for an apocalyptic zombie-like attack...if they're gray, prepare yourself to be licked up the side of your face or have him climb up in your lap just to pass gas on you and take off running or just generally be mischievous.
He doesn't understand personal space. It's perfectly acceptable to him to put his nose to your nose just to tell you hello. Or climb up in your lap, even if you're a perfect stranger.
He sneaks...like a ninja...out of his bed and into his daddy's & mine on a regular basis. We've timed it. It has taken up to 30 minutes for him to get out of bed, walk down the hall, climb onto the foot of our bed and inch his way up to the pillows between us. It's hard to pretend you're asleep so he doesn't know you've busted him when all you really want to do is belly laugh out loud. [I told you in the beginning he was determined!]
He says things like, "I'm not talking about at this moment. I mean, at the other moment. You know, when I was in the shower?" This moment...really, kid?! What happened to "a while ago" or "earlier" or "right now"?!
Anyway...enjoy these shots from our Mom-Tog moment...I didn't put my good friend Carrie Small out to do his 5-year old pics...yet. ;) I'm still trying to decide if I love these enough to use them, or if I'm gonna cave and take him to "Miss Carrie" after all..we shall see...
I sure do love you, kid...to the moon & back...to pieces...even more than that!
Friday, October 25, 2013
The Race Card
I'm white. No, really. I am. Well, except that my maternal grandmother was a Cherokee Indian. And my maternal grandfather was Scottish. And I'm pretty sure my paternal grandmother was Irish. And I strongly suspect there's some more Native American blood on my paternal grandfather's side. So...maybe I'm not really white after all. Wait, what does it mean to be "white"?
Either way, it doesn't really matter. I'm an American. I was raised in an American home, taken to church regularly, taught to respect my elders, taught to respect authority, and taught to work for what I have. I was raised surrounded by family with the same ideals (church, respect, work). I was raised to not sit around waiting for others to take care of me.
I've been friends with people of all races. Some of my closest friends are "people of color" - that is, they're African American. Or Black. Whatever label you want to put on them. I'm not friends with these people because they are African Americans. I'm friends with them because I value them. I appreciate them as PEOPLE. I believe they have good hearts and good heads.
My husband & I have practically adopted (or been adopted into?) a Hispanic family from church. I love them as though they are my brother, sister, niece and nephews. I'd do anything within my power for them. I never had siblings growing up. And, being stabbed in the back by the closest thing I did have to a sibling just a few years ago really took a toll on my ability to love and trust people, even those related to me by blood. So, to have found a brother and sister - whom I love and trust - has been a true blessing. I don't look at them as being Puerto Rican or Mexican. I look at them as my brother and his wife, my sister. I look at their children as my niece and my nephew. And I hope they will always consider me their sister; their Ti-Ti. I don't love them because they're Hispanic. I love them because they are people who have the same ideals that I do (church, respect, work).
I guess what I'm trying to say is that, in general, when I look at people, I try to evaluate them for WHO they are. Not what color their skin is.
Today, one of those friends of mine, who happens to be African American, said to me as we disagreed about something, "You won't ever understand. You'd have to change the color of your skin in order to understand."
I'm sorry, what?! I won't go into the difference of opinions that led to this comment. That's not really important. In fact, none of this is really important to any of you reading this, it's just important to me that I vent my frustration at having someone pull that card with ME. It hurt. A lot. I try to be respectful of most everyone (except for maybe extreme liberals because they're generally just idiots), and to not judge them based on the color of their skin. I try to look past outward appearances in all cases, not just in cases of skin color, to the person INSIDE. I have to admit, I am deeply saddened to see - to learn - that this friend sees ME as a white girl instead of as a human being. Here, _____, you can have The Race Card back. I don't want it. Save for the next "injustice" you see.
Either way, it doesn't really matter. I'm an American. I was raised in an American home, taken to church regularly, taught to respect my elders, taught to respect authority, and taught to work for what I have. I was raised surrounded by family with the same ideals (church, respect, work). I was raised to not sit around waiting for others to take care of me.
I've been friends with people of all races. Some of my closest friends are "people of color" - that is, they're African American. Or Black. Whatever label you want to put on them. I'm not friends with these people because they are African Americans. I'm friends with them because I value them. I appreciate them as PEOPLE. I believe they have good hearts and good heads.
My husband & I have practically adopted (or been adopted into?) a Hispanic family from church. I love them as though they are my brother, sister, niece and nephews. I'd do anything within my power for them. I never had siblings growing up. And, being stabbed in the back by the closest thing I did have to a sibling just a few years ago really took a toll on my ability to love and trust people, even those related to me by blood. So, to have found a brother and sister - whom I love and trust - has been a true blessing. I don't look at them as being Puerto Rican or Mexican. I look at them as my brother and his wife, my sister. I look at their children as my niece and my nephew. And I hope they will always consider me their sister; their Ti-Ti. I don't love them because they're Hispanic. I love them because they are people who have the same ideals that I do (church, respect, work).
I guess what I'm trying to say is that, in general, when I look at people, I try to evaluate them for WHO they are. Not what color their skin is.
Today, one of those friends of mine, who happens to be African American, said to me as we disagreed about something, "You won't ever understand. You'd have to change the color of your skin in order to understand."
I'm sorry, what?! I won't go into the difference of opinions that led to this comment. That's not really important. In fact, none of this is really important to any of you reading this, it's just important to me that I vent my frustration at having someone pull that card with ME. It hurt. A lot. I try to be respectful of most everyone (except for maybe extreme liberals because they're generally just idiots), and to not judge them based on the color of their skin. I try to look past outward appearances in all cases, not just in cases of skin color, to the person INSIDE. I have to admit, I am deeply saddened to see - to learn - that this friend sees ME as a white girl instead of as a human being. Here, _____, you can have The Race Card back. I don't want it. Save for the next "injustice" you see.
Tuesday, September 10, 2013
Time for a Public Announcement
So, I suppose the time has come for me to come clean. I've tried to keep from sharing but as this thing progresses, it gets harder to hide.
And...for those of you who think I'm about to spill news of a pregnancy...well...get that little thought right out of your minds!
So, here's the big announcement: I'm having brain surgery! [Doesn't that sound like fun?]
[Excerpts from National Institute of Neurological Disorders and Stroke]
What are Chiari malformations?
And...for those of you who think I'm about to spill news of a pregnancy...well...get that little thought right out of your minds!
So, here's the big announcement: I'm having brain surgery! [Doesn't that sound like fun?]
[Excerpts from National Institute of Neurological Disorders and Stroke]
What are Chiari malformations?
Chiari malformations (CMs) are
structural defects in the cerebellum, the part of the brain that
controls balance. Normally
the cerebellum and parts of the
brain stem sit in an indented space at the lower rear of the skull,
above the foramen magnum
(a funnel-like opening to the spinal
canal). When part of the cerebellum is located below the foramen
magnum, it is called
a Chiari malformation.
CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain.
How are they classified?
Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brain stem. Normally, only the spinal cord passes through this opening. Type I—which may not cause symptoms—is the most common form of CM and is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Type I is the only type of CM that can be acquired.
[End excerpts]
I have Type I Chiari malformation. I was first diagnosed about 12 years ago after a bout with severe occipital migraines with vision impairment. It is still unknown whether the CM was actually to blame for those migraines, which resolved after several rounds of trigger-point injections into the occipital area of my head.
Fast-forward to July 2012.
I crawl into bed one night, close my eyes and suddenly feel as though I'm riding the Gravitron and I can't make it stop. I spend the next several days bouncing in and out of dizzy whirlwinds that don't actually exist. Within a few more days, I notice that it feels like my heart is skipping beats. Basically, I feel: beat---beat---beat---pause------------------beat-beat-beat---beat---beat. This heart thing always happens when I'm dizzy but I can be dizzy and not notice the heart thing. Did that make sense? Anyway, I decided to see the doctor who refers me to a Cardiologist. Diagnosis: Vertigo and Premature Ventricular Contractions. Both "no big deal."
November rolls around and I'm still dizzy a good part of the time and I've been having this niggling little headache. Not like, "I need a tylenol" headache or anything, just more of a "can my head just stop hurting already?!" headache. One day late in the month, I drive over to see my mom at work on my lunch break. 5.0 miles away. I have made the drive hundreds of times over the 14 years I've had a drivers' license. I make 3 wrong turns trying to return to work. At each point, nothing - NOTHING - in my surroundings seems familiar. I finally pull over into a parking lot and use the GPS on my phone to lead me back to work. I would go on to experience several more instances of geographical confusion; eventually using GPS to drive pretty much anywhere.
In January, I make a doctor's appointment for a complete physical. My PCP refers me to a neurologist in Raleigh. Over the next several weeks, I experience lots of testing:
I have a follow-up with the Neurologist who ordered all those test & made all those decisions. She makes me feel like a hypochondriac and tries to push pills down my throat. At the insistence of a friend at work, I sought a referral for a second opinion.
Somewhere along in this mix, I start having difficulties with "word finding" - I struggle to find the words I'm looking for, or sometimes just say the wrong thing altogether.
Enter: Dr. Justin Mhoon, MD, Chair of the Neurology Division at Duke's Department of Neurology. Dr. Mhoon examines me, spends about 35 minutes talking to me, and orders an MRI with SINE study. This test takes approximately 2 hours. It is an MRI of my head, brain, c-spine and t-spine, with a test to determine the flow of spinal fluid in and around those areas scanned. Results: 1. Findings of Chiari type I malformation with approximately 1.1 cm cerebellar tonsillar ectopy. CSF flow study demonstrates diminished flow posterior to the cerebellum and within the distal jugular system. No cord syrinx is identified.
Dr. Mhoon refers me to a Duke Neurosurgeon and an ENT. After a complete ENT workup that was pointless [Yes, Ms. Hall, you do have a confirmed 45% loss of vestibular function, however, it appears that your brain has already compensated for that loss of function and therapy would not be beneficial to you], I had a consult with Dr. Bagley, Director of Neurosurgery for Duke.
And, sooo, I say all of that to say this:
Sometimes I don't feel well. Sometimes the room is spinning around me. Sometimes I need to use my GPS to drive home from work. Sometimes I really just need to hide and take a nap. Sometimes I just need you to pray for me to have a better day. Sometimes I stumble. Sometimes I catch myself and sometimes I even fall. Sometimes I call the microwave a dishwasher and the can opener a toaster. Sometimes I get mad that you drank all the milk when we're out of bread. Sometimes I'll ask you to put my purse in the sink when there isn't a sink in sight. Sometimes I will forget things that I did or said. Sometimes I will feel like I'm choking or can't get enough air even when there's nothing wrong. Sometimes I won't be able to pick up that paperclip or peel that sticker off my apple. Sometimes it will take all of my energy just to lift my arms.
Please don't judge me. Over the next few months, I will progressively get worse as I have since this time a year ago; so if I say something stupid to you, please just smile and nod like it made perfect sense. And, please remember me in your prayers as December approaches. Surgery is scheduled for December 2 at Duke.
Thank you.
CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain.
How are they classified?
Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brain stem. Normally, only the spinal cord passes through this opening. Type I—which may not cause symptoms—is the most common form of CM and is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Type I is the only type of CM that can be acquired.
[End excerpts]
I have Type I Chiari malformation. I was first diagnosed about 12 years ago after a bout with severe occipital migraines with vision impairment. It is still unknown whether the CM was actually to blame for those migraines, which resolved after several rounds of trigger-point injections into the occipital area of my head.
Fast-forward to July 2012.
I crawl into bed one night, close my eyes and suddenly feel as though I'm riding the Gravitron and I can't make it stop. I spend the next several days bouncing in and out of dizzy whirlwinds that don't actually exist. Within a few more days, I notice that it feels like my heart is skipping beats. Basically, I feel: beat---beat---beat---pause------------------beat-beat-beat---beat---beat. This heart thing always happens when I'm dizzy but I can be dizzy and not notice the heart thing. Did that make sense? Anyway, I decided to see the doctor who refers me to a Cardiologist. Diagnosis: Vertigo and Premature Ventricular Contractions. Both "no big deal."
November rolls around and I'm still dizzy a good part of the time and I've been having this niggling little headache. Not like, "I need a tylenol" headache or anything, just more of a "can my head just stop hurting already?!" headache. One day late in the month, I drive over to see my mom at work on my lunch break. 5.0 miles away. I have made the drive hundreds of times over the 14 years I've had a drivers' license. I make 3 wrong turns trying to return to work. At each point, nothing - NOTHING - in my surroundings seems familiar. I finally pull over into a parking lot and use the GPS on my phone to lead me back to work. I would go on to experience several more instances of geographical confusion; eventually using GPS to drive pretty much anywhere.
In January, I make a doctor's appointment for a complete physical. My PCP refers me to a neurologist in Raleigh. Over the next several weeks, I experience lots of testing:
- MRI: Confirmed Chiari Type I. It is this Neurologist's opinion that Chiari is asymptomatic.
- VNG: Diagnosed with 45% Vestibular Loss of Function in left ear. - This Neurologist thinks this is to blame for the dizziness. Prescribes Vestibular Therapy.
- Sleep Study: Diagnosed with sleep apnea with an AHI of 65. This Neurologist thinks this is to blame for fatigue, headaches and confusion. Prescribes CPAP.
I have a follow-up with the Neurologist who ordered all those test & made all those decisions. She makes me feel like a hypochondriac and tries to push pills down my throat. At the insistence of a friend at work, I sought a referral for a second opinion.
Somewhere along in this mix, I start having difficulties with "word finding" - I struggle to find the words I'm looking for, or sometimes just say the wrong thing altogether.
Enter: Dr. Justin Mhoon, MD, Chair of the Neurology Division at Duke's Department of Neurology. Dr. Mhoon examines me, spends about 35 minutes talking to me, and orders an MRI with SINE study. This test takes approximately 2 hours. It is an MRI of my head, brain, c-spine and t-spine, with a test to determine the flow of spinal fluid in and around those areas scanned. Results: 1. Findings of Chiari type I malformation with approximately 1.1 cm cerebellar tonsillar ectopy. CSF flow study demonstrates diminished flow posterior to the cerebellum and within the distal jugular system. No cord syrinx is identified.
Dr. Mhoon refers me to a Duke Neurosurgeon and an ENT. After a complete ENT workup that was pointless [Yes, Ms. Hall, you do have a confirmed 45% loss of vestibular function, however, it appears that your brain has already compensated for that loss of function and therapy would not be beneficial to you], I had a consult with Dr. Bagley, Director of Neurosurgery for Duke.
And, sooo, I say all of that to say this:
Sometimes I don't feel well. Sometimes the room is spinning around me. Sometimes I need to use my GPS to drive home from work. Sometimes I really just need to hide and take a nap. Sometimes I just need you to pray for me to have a better day. Sometimes I stumble. Sometimes I catch myself and sometimes I even fall. Sometimes I call the microwave a dishwasher and the can opener a toaster. Sometimes I get mad that you drank all the milk when we're out of bread. Sometimes I'll ask you to put my purse in the sink when there isn't a sink in sight. Sometimes I will forget things that I did or said. Sometimes I will feel like I'm choking or can't get enough air even when there's nothing wrong. Sometimes I won't be able to pick up that paperclip or peel that sticker off my apple. Sometimes it will take all of my energy just to lift my arms.
Please don't judge me. Over the next few months, I will progressively get worse as I have since this time a year ago; so if I say something stupid to you, please just smile and nod like it made perfect sense. And, please remember me in your prayers as December approaches. Surgery is scheduled for December 2 at Duke.
Thank you.
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