Thursday, May 30, 2013
Thursday, May 23, 2013
Lucky Time
Lately, I've been waking up in the middle of the night..well, not
really the middle--sort of the end, or the beginning of the morning.
Regardless, I've been waking up at ungodly hours. Many thoughts wander
in and out of my head. This awakening is different than any other I've
ever had. Until recently, when I awoke, I usually was jerking myself
awake due to some horrific dream. Occasionally, those scary dream do
still occur, but this new awakening is different.
Before opening my eyes, I visibly see my room. The soft neutral shades of the night. I can feel my husband next to me..and am aware of at least one of our two dogs laying near me. :I sometimes don't even open my eyes, things seem clearer in this realm than in the real world. I see through things, not just see them. No, not like x-ray vision. More like internal vision.
Let me explain. When I awaken, I feel my sweet new husband next to me. We sleep together like a perfect song. I move, he moves. I rollover, he rolls over. Our bodies work in perfect time together, never awkward, never uncomfortable. I feel him, and even with my eyes closed I see him. In my mind's eye I see love, compassion, tenderness. An instant awareness overtakes me. I am safe. I am home. Then I try to move, one of our two little creatures inevitably has their head on my feet. I don't know which one, but I see them, in my heart. I see loyalty and love. I feel their need to be close to us. I feel protected and safe.
I have been lying awake for hours lately. Eyes closed, thinking. Just thinking. Pondering my life. How did I get to this place? How did I find this sweet man? How did I live unhappily married for so long before? How did I have a brain disorder that went undiscovered for forty-four years? How am I ever going to heal from all of this? How will I ever get a book written? How will I ever get a book published? And so forth and so on until either I must get up because my body aches or Bob's alarm goes off.
I guess I'm writing about this because even in the midst of all of the recent chaos, the surgery, the wedding, physical therapy, going to Europe, more tests, no answers, decreased income, visits with Kaitlyn, etc..I am more at peace than ever. My spirit is calm and I am okay. I'm sad in some ways. I'm lonely in other ways. Yet, I'm really, really at peace. My heart feels light. My soul feels unburdened. I can't really say why. I have no answer. My "friends" have all but disappeared. My job is uncertain. My income has been slashed. My health is questionable.
Perhaps its because I've learned to accept and love myself. Perhaps its because I've allowed myself to be loved. Perhaps my brain is healing, therefore, my emotions are healing. Maybe I'm simply growing up.
Recently, Dave Waters from the blog "Dave's Big Brain" wrote that he is a lucky man. He actually considers himself "lucky" to have Chiari. I've chuckled about that a time or two. Yeah, right , I thought to myself. Now, I'm starting to consider myself "lucky" as well. Lots of alone time due to Chiari surgery has given me so much time to step back and think, analyze, and get things in perspective. Somethings have been painful, like the loss of friendships-or the realization that these people were never really friends to begin with. However, for every painful thing I've endured-something wonderful has taken its place. I lost some friends but then I gained three new sisters. I've had a lot of pain, but I can hear the birds singing and the rain hitting the roof. I've missed a lot of work due to Chiari, but I've been home with my sweetie every night and I got to spend almost an entire week with my daughter.
Being awake in the middle of the night..--I think I'm going to start calling it my "Lucky Time"
Before opening my eyes, I visibly see my room. The soft neutral shades of the night. I can feel my husband next to me..and am aware of at least one of our two dogs laying near me. :I sometimes don't even open my eyes, things seem clearer in this realm than in the real world. I see through things, not just see them. No, not like x-ray vision. More like internal vision.
Let me explain. When I awaken, I feel my sweet new husband next to me. We sleep together like a perfect song. I move, he moves. I rollover, he rolls over. Our bodies work in perfect time together, never awkward, never uncomfortable. I feel him, and even with my eyes closed I see him. In my mind's eye I see love, compassion, tenderness. An instant awareness overtakes me. I am safe. I am home. Then I try to move, one of our two little creatures inevitably has their head on my feet. I don't know which one, but I see them, in my heart. I see loyalty and love. I feel their need to be close to us. I feel protected and safe.
I have been lying awake for hours lately. Eyes closed, thinking. Just thinking. Pondering my life. How did I get to this place? How did I find this sweet man? How did I live unhappily married for so long before? How did I have a brain disorder that went undiscovered for forty-four years? How am I ever going to heal from all of this? How will I ever get a book written? How will I ever get a book published? And so forth and so on until either I must get up because my body aches or Bob's alarm goes off.
I guess I'm writing about this because even in the midst of all of the recent chaos, the surgery, the wedding, physical therapy, going to Europe, more tests, no answers, decreased income, visits with Kaitlyn, etc..I am more at peace than ever. My spirit is calm and I am okay. I'm sad in some ways. I'm lonely in other ways. Yet, I'm really, really at peace. My heart feels light. My soul feels unburdened. I can't really say why. I have no answer. My "friends" have all but disappeared. My job is uncertain. My income has been slashed. My health is questionable.
Perhaps its because I've learned to accept and love myself. Perhaps its because I've allowed myself to be loved. Perhaps my brain is healing, therefore, my emotions are healing. Maybe I'm simply growing up.
Recently, Dave Waters from the blog "Dave's Big Brain" wrote that he is a lucky man. He actually considers himself "lucky" to have Chiari. I've chuckled about that a time or two. Yeah, right , I thought to myself. Now, I'm starting to consider myself "lucky" as well. Lots of alone time due to Chiari surgery has given me so much time to step back and think, analyze, and get things in perspective. Somethings have been painful, like the loss of friendships-or the realization that these people were never really friends to begin with. However, for every painful thing I've endured-something wonderful has taken its place. I lost some friends but then I gained three new sisters. I've had a lot of pain, but I can hear the birds singing and the rain hitting the roof. I've missed a lot of work due to Chiari, but I've been home with my sweetie every night and I got to spend almost an entire week with my daughter.
Being awake in the middle of the night..--I think I'm going to start calling it my "Lucky Time"
Sunday, May 19, 2013
On the Slow Road to a Non-Profit..
Since this blog was born, it has been my intention to start a non-profit organization and to write a book. Both in an effort to raise awareness. Now, I've added becoming a pilot to my list of ways to promote social awareness. I have to tell you..all three things seem huge and intimidating, yet I can hardly wrestle my focus long enough to do just one. I'm chipping away at the pilot and book thing, yet I'm at a complete stand still with the Non-Profit.
Non-Profits sound cool and selfless. They are more work than you would think. Right now, Bob and I are working on choosing people for our Board of Directors. We need at least five people, with the majority not being family. So we need three people that are not family. Problem is..we live in Texas and have few close friends near us. We have solicitated our closest friends here, a husband and wife team, so we need two more. Where to find them? Who do we trust with our organization? Who do we trust with our budget and our plans. Even more difficult, what are our budget and plans?
We want to promote knowlege in the medical and private communities. We want to eventually get a book published (even self-published would work), offer speaking appearances and I want to do a National Awareness Flight, and would love to eventually make an International flight. This involves fundraising, finding an airplane, paying for my flight instruction (Bob is a flight instructor, but we don't own a plane, so we have to rent a plane for every lesson), paying for licenses ...and the list goes on. I can barely comprehend all of the ideas in my head. Imagine, if we had a plane, we could offer ferry services to patients that can't afford to travel to Chiari specialists in other states. We'll call it Zipperflight..(we've talked a great deal as you can tell)!
But it all starts with a Board of Directors..Are you interested in joining us in this endeavor? Do you have ideas or thoughts about how we can promote Chiari Awareness and Education? If you are hesitant to post here, send an email or message me on our Constricted Cranium page on FB. I'd love to hear from you.
Non-Profits sound cool and selfless. They are more work than you would think. Right now, Bob and I are working on choosing people for our Board of Directors. We need at least five people, with the majority not being family. So we need three people that are not family. Problem is..we live in Texas and have few close friends near us. We have solicitated our closest friends here, a husband and wife team, so we need two more. Where to find them? Who do we trust with our organization? Who do we trust with our budget and our plans. Even more difficult, what are our budget and plans?
We want to promote knowlege in the medical and private communities. We want to eventually get a book published (even self-published would work), offer speaking appearances and I want to do a National Awareness Flight, and would love to eventually make an International flight. This involves fundraising, finding an airplane, paying for my flight instruction (Bob is a flight instructor, but we don't own a plane, so we have to rent a plane for every lesson), paying for licenses ...and the list goes on. I can barely comprehend all of the ideas in my head. Imagine, if we had a plane, we could offer ferry services to patients that can't afford to travel to Chiari specialists in other states. We'll call it Zipperflight..(we've talked a great deal as you can tell)!
But it all starts with a Board of Directors..Are you interested in joining us in this endeavor? Do you have ideas or thoughts about how we can promote Chiari Awareness and Education? If you are hesitant to post here, send an email or message me on our Constricted Cranium page on FB. I'd love to hear from you.
Latest Post from One of my other blogs...."And So She Flies.."
May 18, 2013
Heart Of Texas First Annual Fly-In
McGregor Municipal Airport, McGregor, Texas
A few weeks ago, Bob and I attended a monthly breakfast of this chapter of the EAA (Experimental Aircraft Association). I've been hesitant to write about this breakfast meeting experience-
Until now.
After attending the association's first fly-in-I have no qualms about posting my real opinion. I
mean it's just an opinion-everybody has one.
So, we go to the breakfast, which happens once a month at this small airport. We are all gung-ho..ready to join-to jump in and be part of things.
I don't want to be an association basher-- I believe in second chances....
The Fly-In was the second chance.
Anyway, so we go, we join, we are barely greeted. The lady that signed us up spoke more than anyone. It's obvious that this association has people that have been meeting together
for years. They know each other, joke with each other and work alongside each other.
WE are outsiders. We remain outsiders.
One sweet lady took the time to talk with me.
No one else even acknowledged our presence.
Gee-Thanks guys.
We are pretty thick skinned though. We walk around, look at the planes. Bob tells me about the different types-it's not a total waste of a morning. I mean after all, blueberry pancakes were involved.
Still, after a few hours, we leave deflated and honestly, wondering why we went.
Yet, we are resolved to stick it out, to go back for the Fly-In.
So we did just that yesterday.
So, this Fly-In is at the same airport. It's a three day event where owners can fly their planes in and attend things like Texas Hold 'Em Poker and FAA Safety Seminars. For kiddos they have flight simulators, crafts and an opportunity to build their own airplane.
Upon arrival to the airport, we spot friends of ours from Waco Flying Service, Aaron and Alisa Dabney. Aaron is the President of the EAA Chapter in Victoria, TX and is a Flight Instructor at Waco Flying Service. We are so glad they are there. Friendly faces are a wonderful thing.
Alisa, like myself, wants to become a pilot. She flies with Aaron, so has much more experience in the aviation realm than I. Like me, she has the fear of landing a plane on her own.
I think this is a healthy fear, not a terminal fear.-The type of fear that will keep us on our toes and make us better pilots.
Bob and Aaron by Waco Flying Service's Legend Cub
For the most part, our day was spent hanging out by the Cub with Aaron and Alisa. Alisa, Bob and I went to the FAA Maintenance Safety Seminar mid-morning.
From this class, I took away a desire to not only purchase my own plane...but to make damned sure it is meticulously maintained. I'm thinking, "We could build our own plane--and we could maintain it--then we know for certain that there is no electrical tape holding it together on the inside" (Yes, you read correctly--there was a photo of some poor pilots who's maintenance guy had used electrical tape..WOW!)
The Fly-In coordinators expected 300 planes at this event-well, that is just too many digits. The attendance was more like 30. The event was under advertised and therefore, under attended.
I felt disappointment for the association and for the vendors.
We stayed from about 9 a.m until about 2:30. The peak of activity was around noon when many of the planes flew in.
I really wish I had an abundance of really cool things to write about this event. I'm pulling every morsel of info from my brain to log here.
There is just not a lot to share.
I hope that by next year's Fly-In (If there is a next year's Fly-In), Bob and I will be more in the swing of the things and will be able to help out.
We are still thick skinned and we will continue to attend.
With some groups, this is the key, just continuing to show up, and eventually becoming accepted.
We have many ideas to amp up this association.
We offered to help with this Fly-In and were turned away.
So-a word to any of you in associations such as EAA-or really, any type of organization with voluntary membership:
Be nice to new people. Make them feel welcome and wanted. Open your mouth and talk to them. Ask about their families. Ask about their lives. If people are coming to your organization, there is a reason. They took the time to show up for a reason. Have designated greeters.
Have an agenda. Take a look at your membership.. Are you stuck in a rut? If your membership isn't growing, it's dying. Are you passing the buck? Thinking you don't have to reach out to new people because someone else is?
I've got news for you, someone else probably ISN'T.
Long ago, in a different life, I learned this working with volunteer organizations.
I know how I want to be treated, so, as a rule of thumb, that's precisely how I treat others.
Now, back to the real issue at hand--becoming a pilot.
I'm still daunted by the task. I wake in the middle of the night and envision myself in a cockpit alone.
I'm in awe of other women that have become pilots. They are like super-heroes in my mind.
They are fearless, warriors of the air.
I'm still here, in basic training, feeling like my ambition is in a holding pattern.
Forever waiting for my brain to cooperate with the rest of my body.
Soon, I will have an initial flight.
I've been waiting to be able to get a medical certificate-which may not happen for awhile.
So, I am going to start as a Sport Pilot.
At least that gets me started.
Requirements from the FAA are as follows:
MEDICAL REQUIREMENTS
FOR
SPORT PILOT
(14 CFR part 61.23/53/303)
A Medical or U.S. Driver’s License
(Other than Balloon or Glider)
A Student Pilot Seeking Sport Pilot Privileges in a Light-Sport Aircraft
A Pilot Exercising the Privileges of a Sport Pilot Certificate
A Flight Instructor Acting as PIC of a Light-Sport Aircraft
A Person Using a Current and Valid U.S. Driver’s License Must
Comply With Any Judicial or Administrative Order Applying to the Operation of a Motor Vehicle
Not Have Been Denied Your Most Recent Application for a Medical Certificate (If You Have Applied for Medical Certificate)
Not Have Your Most Recently Issued Medical Certificate Suspended or Revoked (If You Have Been Issued a Medical Certificate)
Not Had Your Most Recent Authorization for a Special Issuance of a Medical Certificate Withdrawn (A Special Issuance Is Not a Denial)
A Person Using a Valid Medical or Current and Valid U.S. Driver’s License Must
Full requirements from the FAA can be found here.
Yes, I have to be careful. I have to really listen to my body and my brain.
I'm just tired of waiting. Tired of being a slave to my constricted cranium.
Yesterday, when talking with Alisa, we talked about hot air balloons. She and I both want to go up in one. We were talking about how Aaron will fly anything but will not get in a hot air balloon.
I asked him about this. His reason? True to his gender, he answered, "I want to be in control".
I have pondered his response several times since.
I think about my brain not cooperating.
I want to be in control, too.
Sometimes it's like I'm floating around in a hot air balloon. I'm at the mercy of every wind gust (or in my case, every fluctuation of CSF pressure).
I want to be in control, too.
So, instead of giving in to this hot air balloon of a brain, I'll take control and keep pushing forward toward my goal of becoming a pilot.
I will, somehow, take control and I will learn to fly.
I wonder what is more difficult-willfully giving up control-or willfully regaining control?
Can this be compared to wrestling your brain back in to control after the brain in question ripped that control out from under you?
Many points to ponder and discuss as I mentally and physically prepare for pilotship (is that a word?).
Isn't control (or the lack thereof) is an illusion we buy in to or give in to?
Control is abstract, intangible and theoretical.
Yet, somehow, we put it on an altar and worship it.
We seek it more than anything else in life.
Control of our lives, our bodies, our finances, our relationships, our abilities.
All I really want here is to be "in control" enough to sit at the "controls" of an airplane and "control" it's movements enough to safely leave the ground, soar through the air and return, in "control".
Maybe the key to appreciating "control" is to lose it.
Maybe that's the reason I have Chiari Malformation Type 1.
Or maybe, just maybe...there is no deeper meaning.
I'm just trying to justify telling Aaron he should just get in a freaking balloon.
Time flies....So should you.
Wednesday, May 15, 2013
Photos from surgery
In pre-op, waiting to get my zipper at Memorial Hermann, Houston, TX
January 23, 2013
Initial photo in ICU, my hand complete with pulse oximeter, holding back my hair.
Post Op Day 1 in ICU
Pigtails courtesy of my mom.
January 24, 2013
Layne and I Post op Day 2 Right before going home.
Our twin scars, in my hospital room at Memorial Hermann,
January 25, 2013
Headed home from the hospital.
January 25, 2013
One week post-op with my best buddy "MonkeyDog"..the only thing I could lay my head
on after surgery-a gift from a friend.
9 days postop--Not a bad haircut, thanks to Dr. Lo
Bandage off day-10 days postop..
all I need is a bar through my head and I'd look like Frankenstein.
And so she rambles...
I do not like the giant magnet.
I came to this decision yesterday while laying in the tube with my head in a harness and that incessant knocking jarring my every thought.
The giant magnet reveals everything.
Every hidden secret in my body.
Like an untrustworthy friend, it spews my physical flaws into images that could be better off left in silence.
The giant magnet seems to taunt me as I'm there, trapped and motionless.
I try to pray..and succeed for a brief time, then the knocking wins my focus and I make up lyrics to the rhythm it makes.
"Chiari-put-you-back-in-the-tube.."
"Chiari-put-you-back-in-the-tube.."
"Chiari-put-you-back-in-the-tube.."
"You're-a-neuro-logical-mess.."
"You're-a-neuro-logical-mess.."
"You're-a-neuro-logical-mess.."
Then from nowhere, "I wish I had a taco" .
That's pretty much the way it went until the first two MRI's were complete.
Later, I pick up my MRI CD's and report.
I read the result with my limited neurological knowledge, knowing I really will have no answers until my doctors review these and the remainder of my spine is imaged.
So, what I know so far...with no real interpretation of results or impact on my neurological system is the following:
C-Spine:
Small, thin fluid collection at the posterior skull base
and
C5 lesion consistent with small hemangioma
C2-C3-nothing significant
C3-C4- nothing significant
C4-C5-nothing significant
C5-C6-mildly desiccated disc with T2 signal loss and disc height, small broad based paracentral disc protrusion, mild central canal stenosis, ...and more blah blah blah that I don't understand..so I will spend days looking up--mostly radiological terms about signals-
C6-C7 bilateral perineural cysts along exiting nerve roots
C7-T-1 same as above
Additional note: perineural cysts along exiting nerve roots bilaterally at T1-T2 and on the left at T2-T3, lymph nodes small and not well categorized.
Brain:
Craniotomy defect present...otherwise normal.
Now..I'm sure this is just my opinion..but, in my limited experience--there is still a very likely chance this will all be found "normal"...when we all know, "that ain't normal".
So, now I wait.
...and I research.
I sometimes wish I was one of those people that could just listen to the doctor and believe what he says...however...I know myself well enough to know that would never satisfy this need I have to be prepared, armed with knowledge before the doctor ever calls...
I did finally give in and call my neurosurgeon. I've been dealing mostly with my PCP because I just did not want to make a phone call to Dr. Kim. --After six days of dizziness I finally gave in and called....fully expecting to be told this is just part of the process of healing...
I guess I'm a creature of habit-because as I call Dr. Kim-the phone rings to his office
"ring-ring-ring"
"ring-ring-ring"
"ring-ring-ring"
Dang...is there anyone working in his office today"
I start with lyrics again:
"ring-ring-ring"
"I-hate-Chiari"
"ring-ring-ring"
"Chiari-really-sucks"
"ring-ring-ring"
"Where-the heck-is the staff"
"ring-ring-ring"
"Answer-the-*&!#$-."
Of course, as soon as I let the above referenced expletive come out of my mouth-the receptionist answers..."Mischner Neuroscience"...(great timing lady)
I'm then informed that it's clinic day so I may not be called back until tomorrow.
In my mind a say another profane word..and leave a message.
I say I'm almost 4 months post op and have had extreme dizziness for the past 6 days--and still have positional headaches.
She states back to me, "Okay-I'll have someone call you, I noted you have some pain and dizziness".
"NO" I almost growl, "I have POSITIONAL HEADACHES AND I'VE BEEN EXTREMELY DIZZY FOR 6 DAYS!!"
As I hang up, I think how sad it is that people don't listen, or pay attention. No wonder we have such trouble getting diagnosed and treated. Are we just not communicating properly? Can I not speak or can they not hear? As Chiarians..do we as a group lack the ability to properly convey the hellish ordeal we have been dealing with...or do our complaints fall on deaf..or rather..otherwise occupied ears that can only hear what they want?
Do we speak Chairian? Is it another language? Are we really from another world? Are we all from another planet (could the truth be that we actually are Sleestaks, I mean our heads are misshaped and we speak another language-you do the math)...or are we all just now starting to find others with our language since being dispersed at the Tower of Babel?
Whatever the reason...something has got to give. People need to be educated about our disorder. Our physicians, nurses, families, neighbors, etc. This is bigger than just you and I . Every where I turn, someone has a new diagnosis...or a friend diagnosed after years of headaches who intentionally asked about Chiari and was told she does have it and its "Borderline" ..or a niece that is told she has "Chiari, but its mild and can't be causing her problems". How is this so prevalent, yet so obscure?
I started this blog for awareness. As you know, I have a Facebook page by the same name. For sometime, even way before Chiari, I've wanted to be a published writer. I love, love, love writing. I've decided to start the process of turning this blog, my Chiari experience, into a book. I know this all has a purpose in my life and just maybe it is so I can write about it and help others. I have many details to sort out, so I am looking at writing as my full-time job for now. This time of indecision, testing and recovery is my time to get this going. I would appreciate any advice, comments, links, articles, etc that you feel would be helpful in this endeavor. I want to cover not only Chiari and my journey, but also, Ehlers-Danlos Syndrome, Arachnoid Cysts, Tethered Cord, Cervical myelopathy, fibromyalgia, chronic fatigue syndrome, inflammatory arthritis, empty sella syndrome..any and all disorders that affect us, and in many cases, lead us to misdiagnosis.
Thank you for continuing to read. We now have over 1500 site visits in 15 countries...keep sharing and spreading the word.
I came to this decision yesterday while laying in the tube with my head in a harness and that incessant knocking jarring my every thought.
The giant magnet reveals everything.
Every hidden secret in my body.
Like an untrustworthy friend, it spews my physical flaws into images that could be better off left in silence.
The giant magnet seems to taunt me as I'm there, trapped and motionless.
I try to pray..and succeed for a brief time, then the knocking wins my focus and I make up lyrics to the rhythm it makes.
"Chiari-put-you-back-in-the-tube.."
"Chiari-put-you-back-in-the-tube.."
"Chiari-put-you-back-in-the-tube.."
"You're-a-neuro-logical-mess.."
"You're-a-neuro-logical-mess.."
"You're-a-neuro-logical-mess.."
Then from nowhere, "I wish I had a taco" .
That's pretty much the way it went until the first two MRI's were complete.
Later, I pick up my MRI CD's and report.
I read the result with my limited neurological knowledge, knowing I really will have no answers until my doctors review these and the remainder of my spine is imaged.
So, what I know so far...with no real interpretation of results or impact on my neurological system is the following:
C-Spine:
Small, thin fluid collection at the posterior skull base
and
C5 lesion consistent with small hemangioma
C2-C3-nothing significant
C3-C4- nothing significant
C4-C5-nothing significant
C5-C6-mildly desiccated disc with T2 signal loss and disc height, small broad based paracentral disc protrusion, mild central canal stenosis, ...and more blah blah blah that I don't understand..so I will spend days looking up--mostly radiological terms about signals-
C6-C7 bilateral perineural cysts along exiting nerve roots
C7-T-1 same as above
Additional note: perineural cysts along exiting nerve roots bilaterally at T1-T2 and on the left at T2-T3, lymph nodes small and not well categorized.
Brain:
Craniotomy defect present...otherwise normal.
Now..I'm sure this is just my opinion..but, in my limited experience--there is still a very likely chance this will all be found "normal"...when we all know, "that ain't normal".
So, now I wait.
...and I research.
I sometimes wish I was one of those people that could just listen to the doctor and believe what he says...however...I know myself well enough to know that would never satisfy this need I have to be prepared, armed with knowledge before the doctor ever calls...
I did finally give in and call my neurosurgeon. I've been dealing mostly with my PCP because I just did not want to make a phone call to Dr. Kim. --After six days of dizziness I finally gave in and called....fully expecting to be told this is just part of the process of healing...
I guess I'm a creature of habit-because as I call Dr. Kim-the phone rings to his office
"ring-ring-ring"
"ring-ring-ring"
"ring-ring-ring"
Dang...is there anyone working in his office today"
I start with lyrics again:
"ring-ring-ring"
"I-hate-Chiari"
"ring-ring-ring"
"Chiari-really-sucks"
"ring-ring-ring"
"Where-the heck-is the staff"
"ring-ring-ring"
"Answer-the-*&!#$-."
Of course, as soon as I let the above referenced expletive come out of my mouth-the receptionist answers..."Mischner Neuroscience"...(great timing lady)
I'm then informed that it's clinic day so I may not be called back until tomorrow.
In my mind a say another profane word..and leave a message.
I say I'm almost 4 months post op and have had extreme dizziness for the past 6 days--and still have positional headaches.
She states back to me, "Okay-I'll have someone call you, I noted you have some pain and dizziness".
"NO" I almost growl, "I have POSITIONAL HEADACHES AND I'VE BEEN EXTREMELY DIZZY FOR 6 DAYS!!"
As I hang up, I think how sad it is that people don't listen, or pay attention. No wonder we have such trouble getting diagnosed and treated. Are we just not communicating properly? Can I not speak or can they not hear? As Chiarians..do we as a group lack the ability to properly convey the hellish ordeal we have been dealing with...or do our complaints fall on deaf..or rather..otherwise occupied ears that can only hear what they want?
Do we speak Chairian? Is it another language? Are we really from another world? Are we all from another planet (could the truth be that we actually are Sleestaks, I mean our heads are misshaped and we speak another language-you do the math)...or are we all just now starting to find others with our language since being dispersed at the Tower of Babel?
Whatever the reason...something has got to give. People need to be educated about our disorder. Our physicians, nurses, families, neighbors, etc. This is bigger than just you and I . Every where I turn, someone has a new diagnosis...or a friend diagnosed after years of headaches who intentionally asked about Chiari and was told she does have it and its "Borderline" ..or a niece that is told she has "Chiari, but its mild and can't be causing her problems". How is this so prevalent, yet so obscure?
I started this blog for awareness. As you know, I have a Facebook page by the same name. For sometime, even way before Chiari, I've wanted to be a published writer. I love, love, love writing. I've decided to start the process of turning this blog, my Chiari experience, into a book. I know this all has a purpose in my life and just maybe it is so I can write about it and help others. I have many details to sort out, so I am looking at writing as my full-time job for now. This time of indecision, testing and recovery is my time to get this going. I would appreciate any advice, comments, links, articles, etc that you feel would be helpful in this endeavor. I want to cover not only Chiari and my journey, but also, Ehlers-Danlos Syndrome, Arachnoid Cysts, Tethered Cord, Cervical myelopathy, fibromyalgia, chronic fatigue syndrome, inflammatory arthritis, empty sella syndrome..any and all disorders that affect us, and in many cases, lead us to misdiagnosis.
Thank you for continuing to read. We now have over 1500 site visits in 15 countries...keep sharing and spreading the word.
My Brain Feels like "The Shmoo"
A week ago, I received less than great news from my doctor. If you read my last post, or if you were unfortunate enough to talk to me last week...you heard the story..and you heard me crying with frustration and despair. Then we had weekend guests, so I just kind of saturated myself in their visit while letting my self loathing brew inside. I wrote a blog post last Friday called, "No Reserves Left". I just felt drained of any and all energy to fight my body any longer. I felt empty and void of any shred of inner strength. Not just because of what the doctor said--but because since last Wednesday, I've experienced severe dizziness everyday. Generally I wake up clear headed and my head gets pretty squirrely by mid-morning. Even when I'm still, it's like the inside of my head moves and mushes around, it's like an uncontrollable organism...kind of makes me think of the "Shmoo" cartoon character. Nothing seems to help --- even when I try to sleep the movement in my head continues to wobble around, leading to lots of lost sleep over the past few days.
I'm waiting on word from my job, as I know they will be making a decision about my employment soon. I'm certain I will be terminated due to my long absence. That is very upsetting, because-yes-I can get on Bob's insurance--but I will have to meet that company's deductibles ..when I've already met crazy deductibles this year. If I just had a job sitting at a desk, I could already be back at work. At least I have short term disability still coming in....and you can be assured, my next conversation with my neurosurgeon will include a speech from myself to Dr. K about giving patients realistic goals about returning to work.
Anyway..I've taken a few days of defeat,to let this sink in and to lick my wounds and now I'm ready to attack this thing again. I had 2 MRIs on Monday, I have reports (results are posted on my blog) from these, they are not clean, but not horrible. There are many words like "hemangioma", "perineural cysts", "seroma", and so on that I'm researching for more acurate understanding before forming an opinion about. I'm waiting on word from both doctors on how to proceed and waiting on my next MRIs to be scheduled.
I know I'm a rollercoaster of emotions with every post...imagine what my poor husband has to deal with..poor guy..we've been married a month now and we have run the gamut of emotions in that month. I appreciate you staying around for the ride. Thank you for continuing to pray for us and to show your support.
Prayer requests:
My daughter, age 20, is having an MRI of the brain this week to rule out Chiari. She has suffered with migraines and neurological issues since age 16.
My friend, Alisa Dye, is having her 5th chemo treatment this week for ALL. She told me last night she is hoping for a stem cell transplant at the end of the summer, which she hopes will extend her life by at least two years.
My Chiari sister, Tonya, is having her Chiari surgery with Dr. Kim on May 22 in Houston.
My Chiari sister, Melissa, is still recovering from her Chiari surgery, with multiple complications from her surgery and shunt placement.
My Chiari brother, Dave, still recovering from his PFD and having a rough time of it.
I'm waiting on word from my job, as I know they will be making a decision about my employment soon. I'm certain I will be terminated due to my long absence. That is very upsetting, because-yes-I can get on Bob's insurance--but I will have to meet that company's deductibles ..when I've already met crazy deductibles this year. If I just had a job sitting at a desk, I could already be back at work. At least I have short term disability still coming in....and you can be assured, my next conversation with my neurosurgeon will include a speech from myself to Dr. K about giving patients realistic goals about returning to work.
Anyway..I've taken a few days of defeat,to let this sink in and to lick my wounds and now I'm ready to attack this thing again. I had 2 MRIs on Monday, I have reports (results are posted on my blog) from these, they are not clean, but not horrible. There are many words like "hemangioma", "perineural cysts", "seroma", and so on that I'm researching for more acurate understanding before forming an opinion about. I'm waiting on word from both doctors on how to proceed and waiting on my next MRIs to be scheduled.
I know I'm a rollercoaster of emotions with every post...imagine what my poor husband has to deal with..poor guy..we've been married a month now and we have run the gamut of emotions in that month. I appreciate you staying around for the ride. Thank you for continuing to pray for us and to show your support.
Prayer requests:
My daughter, age 20, is having an MRI of the brain this week to rule out Chiari. She has suffered with migraines and neurological issues since age 16.
My friend, Alisa Dye, is having her 5th chemo treatment this week for ALL. She told me last night she is hoping for a stem cell transplant at the end of the summer, which she hopes will extend her life by at least two years.
My Chiari sister, Tonya, is having her Chiari surgery with Dr. Kim on May 22 in Houston.
My Chiari sister, Melissa, is still recovering from her Chiari surgery, with multiple complications from her surgery and shunt placement.
My Chiari brother, Dave, still recovering from his PFD and having a rough time of it.
Friday, May 10, 2013
No Reserves Left
I feel like I have no reserves left.
I am a bundle of emotionally and neurologically raw nerve endings.
I feel guilty for not being more of a martyr.
I'm dizzy.
I've been dizzy for most of the past 48 hours.
I feel like I did before surgery.
Dizzy, headache...a little bit of tinnitus.., blurred vision.
And every joint I have aches.
I have family in town.
We've been out shopping, however, my constricted cranium and I have been dropped off at home to rest and regroup before dinner tonight.
No matter how much I petitioned, "I'm really okay"..
My new sisters were having none of that.
How frustrating.
What awful timing!!
Why does this have to hit while they are visiting for Mother's Day?
(my husband's mother passed away this year, my surgery was on the day they chose for her funeral--these sweet sisters gave up their brother to me when they needed him more than I, so he could be with me on surgery day-so we flew them out here to spend this first Mother's Day without their mom-)
I just want to scream, shout and plead for some normalcy.
Chiari makes me mad.
It's an invisible, relentless foe.
I have no reserves of energy left to fight it.
No gumption or moxie.
Today I just want to let it win.
Succumb to a life of dizziness, headaches and weirdness.
As the girls dropped me off and left for yet another shopping adventure...I felt tears well up in my eyes. This diseases is so lonely and isolating.
I changed my clothes, crawled into my bed and thought to myself that I have never felt so alone.
Then I thought of my fellow Chiarians.
Have you felt this way?
If so, I'm sorry..I feel your pain
and
you are not alone.
I am a bundle of emotionally and neurologically raw nerve endings.
I feel guilty for not being more of a martyr.
I'm dizzy.
I've been dizzy for most of the past 48 hours.
I feel like I did before surgery.
Dizzy, headache...a little bit of tinnitus.., blurred vision.
And every joint I have aches.
I have family in town.
We've been out shopping, however, my constricted cranium and I have been dropped off at home to rest and regroup before dinner tonight.
No matter how much I petitioned, "I'm really okay"..
My new sisters were having none of that.
How frustrating.
What awful timing!!
Why does this have to hit while they are visiting for Mother's Day?
(my husband's mother passed away this year, my surgery was on the day they chose for her funeral--these sweet sisters gave up their brother to me when they needed him more than I, so he could be with me on surgery day-so we flew them out here to spend this first Mother's Day without their mom-)
I just want to scream, shout and plead for some normalcy.
Chiari makes me mad.
It's an invisible, relentless foe.
I have no reserves of energy left to fight it.
No gumption or moxie.
Today I just want to let it win.
Succumb to a life of dizziness, headaches and weirdness.
As the girls dropped me off and left for yet another shopping adventure...I felt tears well up in my eyes. This diseases is so lonely and isolating.
I changed my clothes, crawled into my bed and thought to myself that I have never felt so alone.
Then I thought of my fellow Chiarians.
Have you felt this way?
If so, I'm sorry..I feel your pain
and
you are not alone.
Thursday, May 9, 2013
Back to Square One
So here we are.
Back to square one.
Or maybe square two?
I went to the doctor Tuesday.
I though I was going to be released and given a return to work date.
I've been off work for fifteen weeks. (The neurosurgeon estimated 5-8 weeks off)
However, after a lengthy and detail neurological assessment--
The Verdict:
Positive Hoffman's sign bilaterally, greater on the RIGHT.
Hyperreflexia
Decreased abdominal reflexes
Positive finger escape sign on the LEFT
Physician's comment, "I don't know when you will be able to go back".
My comment can't be put into words because I merely sat there and cried.
The Plan:
Brain MRI
C-Spine MRI
Then my doc will call my NS, they will consult and will together order
Full Spine MRI
Possible Outcome: (in order of the likely outcome)
Syringomyelia (presence of syrinx)
Tethered Cord Syndrome
Recurrence of Arachnoid Cyst
Failed decompression surgery
Multiple Sclerosis
Tumor of Spinal Cord
OR-no outcome and my neuro system is just in shock still from regeneration of nerves.
Yes-I cried all day...
I will be terminated from my job soon due to my leave being so long. I am assured they will re-hire me when I'm deemed fit for my duties there..but that is little consolation when I will lose my insurance coverage.
The part that is most upsetting is that I asked for a full spine MRI initially and was not granted one by any of the neurosurgeons or neurologists I saw. They typically look for a syrinx in the C-spine and if they don't see it there it's not further investigated. I should have pushed harder for this test.
But my gosh--I'm tired of having to push for myself.
Why is it that the doctors don't take a comprehensive look initially.
I mean, if I have a cough, I'm now at the point I want them to rule out everything that it could be from upper respiratory infection to tuberculosis to lung cancer at the first visit.
Why is it that we have to claw, fight and bite our way to diagnosis and treatment?
I realize that I could have all negative MRI's and this could show I'm still just in the healing phase. That will be a blessing..and I will be grateful.
However, in my gut--I feel like something has been missed and I want it to be found.
I want to move forward.
Do you have any history of any of the above conditions or positive neuro results? If so, please comment or message your story.
I wish you a symptom-free day.
Back to square one.
Or maybe square two?
I went to the doctor Tuesday.
I though I was going to be released and given a return to work date.
I've been off work for fifteen weeks. (The neurosurgeon estimated 5-8 weeks off)
However, after a lengthy and detail neurological assessment--
The Verdict:
Positive Hoffman's sign bilaterally, greater on the RIGHT.
Hyperreflexia
Decreased abdominal reflexes
Positive finger escape sign on the LEFT
Physician's comment, "I don't know when you will be able to go back".
My comment can't be put into words because I merely sat there and cried.
The Plan:
Brain MRI
C-Spine MRI
Then my doc will call my NS, they will consult and will together order
Full Spine MRI
Possible Outcome: (in order of the likely outcome)
Syringomyelia (presence of syrinx)
Tethered Cord Syndrome
Recurrence of Arachnoid Cyst
Failed decompression surgery
Multiple Sclerosis
Tumor of Spinal Cord
OR-no outcome and my neuro system is just in shock still from regeneration of nerves.
Yes-I cried all day...
I will be terminated from my job soon due to my leave being so long. I am assured they will re-hire me when I'm deemed fit for my duties there..but that is little consolation when I will lose my insurance coverage.
The part that is most upsetting is that I asked for a full spine MRI initially and was not granted one by any of the neurosurgeons or neurologists I saw. They typically look for a syrinx in the C-spine and if they don't see it there it's not further investigated. I should have pushed harder for this test.
But my gosh--I'm tired of having to push for myself.
Why is it that the doctors don't take a comprehensive look initially.
I mean, if I have a cough, I'm now at the point I want them to rule out everything that it could be from upper respiratory infection to tuberculosis to lung cancer at the first visit.
Why is it that we have to claw, fight and bite our way to diagnosis and treatment?
I realize that I could have all negative MRI's and this could show I'm still just in the healing phase. That will be a blessing..and I will be grateful.
However, in my gut--I feel like something has been missed and I want it to be found.
I want to move forward.
Do you have any history of any of the above conditions or positive neuro results? If so, please comment or message your story.
I wish you a symptom-free day.
Wednesday, May 1, 2013
A Post for Those Facing Surgery
I've had great support from people I've never seen..some I've never talked to in person.
We blog, text, Facebook...but not real contact..yet it is very very personal.
One of my Chiari sisters..I didn't ask permission yet, so I'll just call her T...She is having surgery soon..It's been scheduled for awhile now.
However, the dr. called to set up her pre-op appts and now it has suddenly become real.
If you've been decompressed, or had your zipper installed..what ever you want to call it..
You know this feeling.
For so long you fight for a diagnosis, then for treatment.
You joke about brain surgery and the zipper and your haircut .
But there is that moment when it becomes real.
A dagger goes straight through your being...not your heart...your entire being.
You are facing brain surgery.
Your mortality is suddenly shaken.
This is serious stuff.
The only people that really get it are those of us that have lived it.
We know the fear, making out your will, writing letters for loved ones just in case, making out an advanced directive..choosing songs for your potential funeral.
These are all things we should do as responsible adults.
However, we are able to deny and rebuke death on our terms (or so we think) until
our neurosurgeon puts a potential date on it.
The number looms in the future and a mordbid countdown begins.
Well, what I want to say to you..and to T..and I did say this to my friend Melissa (who I know doesn't mind me mentioning her name)..is that on the day of surgery..
A peace sets in. Like you can not imagine..and you are carried through it.
Literally, I was held by God's grace through the power of prayer and I sailed through the steps until waking up in ICU.
My first thought, "Wow-that was easy!"
Not for my family that had been waiting for 7 or so hours..
SO if you are facing this surgery..and you are feeling alone..I am here for you..
Support is available online with chiarisupport.org, on FB with ICA, The Constricted Cranium, Texas Chiarians, Chiari Warriors, Chiari-Life, Blogs like Dave's Big Brain and Life Without a Dress Rehearsal.
We are all here for you.. Let us support you..
Our spouses will talk to your spouses..we will get you through this time of uncertainty.
Let us.
Please just let us be there for you.
I'm praying for you T.
I'm praying for Melissa..still in the hospital in Houston.
I'm praying for David Waters.
I'm praying for faceless and nameless Chiarians I've yet to meet.
We blog, text, Facebook...but not real contact..yet it is very very personal.
One of my Chiari sisters..I didn't ask permission yet, so I'll just call her T...She is having surgery soon..It's been scheduled for awhile now.
However, the dr. called to set up her pre-op appts and now it has suddenly become real.
If you've been decompressed, or had your zipper installed..what ever you want to call it..
You know this feeling.
For so long you fight for a diagnosis, then for treatment.
You joke about brain surgery and the zipper and your haircut .
But there is that moment when it becomes real.
A dagger goes straight through your being...not your heart...your entire being.
You are facing brain surgery.
Your mortality is suddenly shaken.
This is serious stuff.
The only people that really get it are those of us that have lived it.
We know the fear, making out your will, writing letters for loved ones just in case, making out an advanced directive..choosing songs for your potential funeral.
These are all things we should do as responsible adults.
However, we are able to deny and rebuke death on our terms (or so we think) until
our neurosurgeon puts a potential date on it.
The number looms in the future and a mordbid countdown begins.
Well, what I want to say to you..and to T..and I did say this to my friend Melissa (who I know doesn't mind me mentioning her name)..is that on the day of surgery..
A peace sets in. Like you can not imagine..and you are carried through it.
Literally, I was held by God's grace through the power of prayer and I sailed through the steps until waking up in ICU.
My first thought, "Wow-that was easy!"
Not for my family that had been waiting for 7 or so hours..
SO if you are facing this surgery..and you are feeling alone..I am here for you..
Support is available online with chiarisupport.org, on FB with ICA, The Constricted Cranium, Texas Chiarians, Chiari Warriors, Chiari-Life, Blogs like Dave's Big Brain and Life Without a Dress Rehearsal.
We are all here for you.. Let us support you..
Our spouses will talk to your spouses..we will get you through this time of uncertainty.
Let us.
Please just let us be there for you.
I'm praying for you T.
I'm praying for Melissa..still in the hospital in Houston.
I'm praying for David Waters.
I'm praying for faceless and nameless Chiarians I've yet to meet.
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