Wednesday, April 30, 2014

"Two Weeks Post-op And All's Well!"

I always thought the job of Town Cryer would be an awesome job. 
I mean, it's almost like being paid to gossip. 
Having all of the inside info on the state of things..whether things are "all well" or "a real x@#$%&! mess".. Well, anyway, I thought it would be a cool job to have. 

I suppose I've become my own personal "CRYER". 
Don't get too fidgety, I'm not doing any real crying-at least not this afternoon.
This morning-well, that was a different story, but not one we are diving into for now. 
Nonetheless, I am my own personal's up to me to declare the state of things.
So here goes...
I'm two weeks post-op today (and all's well!). 
Tomorrow, Bob, Lindsey and I will head down to Houston for (listed in order of importance):
1. Lunch with Katrina and Misty.
2. Post op appt with Dr. Kim to get my stitches out hear what he has to say about surgery.
So far, I've had only brief periods of time alone since hour or so here and there. 
Thanks to my Daughter, Husband, Mom and Daughter-In-Love...I've been pretty well-handled. 
I'm not at all looking forward to starting my real days at home alone, which start on Friday. 
However, I'm pleased to report that I think I'm ready. 
I feel so much better today than I did two weeks after my first surgery. 
My pain has calmed way down. My eyes are better for longer periods.
My neck mobility is almost what it was before this surgery. 
Besides being tired, nauseated more than usual and having no change in hearing loss- I am very pleased. 
I know I owe a great debt to the many of you that have prayed for me. 
I am truly in your debt and am so thankful for you. 
Prayer is something I don't take lightly.
My mom asked me while she was here if I ever wonder if all of the people that say, "I'm praying for you" truly are..I said, "No, I don't"  I just make sure when I say those words, "Praying for you" that I stop right that minute and do just that. (Empty words never helped anyone) 
Guess what I found out, my mom does the same thing.  I've known her my whole life and never knew we had this in common.

I know there are times when my writing is sad, dark, selfish-even down right pathetic. 
I would apologize, but I don't want to. 
I'm real. I'm a realist. 
On any given day I can go from dark and twisty to bright and shiny within seconds. 
 I don't trust people that are happy all the time-It's just not natural. 
Therefore, I  decided to remove the mask I sometimes default into wearing and just say it like it is. 
Love me-hate me, Leave me or keep me..
Whatever you decide, at least its a decision based on truth. 
Because YOU my friend know me inside and out. 
What you read is what you get. 
No more, no less. 

SO.. back to being my own personal Cryer.  
I'm pleased with my progress. I expect to return to Dallas tomorrow evening with no stitches in my head, a good surgical report to my credit and a warm place in my heart from spending the day with my husband, daughter-in-love and seeing my two sweet friends. 
The trip will be long (8 hrs of driving round trip), bumpy (we are taking my husband's bumpy truck because we can't all three squeeze into the two seats of our other car) and most likely painful (due to a combo of bumps and sunshine), so if you can spare a little more prayer-
We could use a little bit more for safe, painless, nausea-free travel and a good check-up. 

Thanks so much- I will try to post an update on Friday.

Saturday, April 26, 2014

No One Quits

How did I get to ten days post op?
The entire surgical process is fading into my memory. 
Mercifully, God has hidden some of the events of the past several days from me. 
Mercifully, He has also allowed several to remain. 

Consistently across the span of the last few weeks, I've sunken into the depths of despair every day. 
Not really a "Why Me?" pity party...
More of a "this is to big for me to carry", hopeless, helpless feeling. 
The feeling of wanting to share this burden of sorrow, yet wanting to also hide it from the world. 
Like I told Bob yesterday, "I just want to lay here and cry for no specific reason"
Not because of the pain, or even the knowledge that this will likely be a lifelong battle, that very few people can state they are "cured" (and of those who do--it rarely lasts very long). 
Crying releases a dam bursting  under too much pressure. 
Crying somehow validates that I can't carry this  burden alone. 
Crying gives me the permission to not be "brave" or "strong" or to wear that ridiculous mask of happiness that I feel is expected from me. 
Crying is a gift.

Last time I had surgery, in January 2013..I blogged more frequently and earlier after surgery. 
I wrote every thought, every ache, pain, wound, realization and "Ah ha!" moment.
Either here or on my CaringBridge site...many people followed as I chronicled the event. I had so much to share, so much to learn, so much to give. 
This time has been so very different. 
Yes, my eyes have had difficulty with electronics so that kept the writing at bay. 
At the same time, I knew I had nothing to really share.
I needed to soak it all in and regurgitate it in a way that really spoke from my heart. 
Not just a timeline of events and milestones. 
I wanted to share my heart in an unmistakable way, in a way that moves people to action. 
As words evolve from my keystrokes, I wonder if I can do justice to all I feel. 
My blogging seems redundant and pointless. 
I'm living in Blah-ville.  
Tears are rolling down my cheeks from some indescribable grief. 
I ache.
I'm tired of this. 
I'm tired of seeing the purple flame on Facebook (signifies the death of a person with Chiari), 
I tell some friends/family members..another one of us passed away. 
They look at me with pity and say nothing. 
My phone rings--I look at it. I recognize the name.  They are going to ask how I feel. 
I let it go to voice mail.  Talking is difficult and talking without crying is impossible.
More tears roll down my face. 
My head is throbbing now. Too much crying. 
Time passes too slowly. 
I have foreign objects in my brain now. Permanent foreign objects. 
I'm the brain surgery girl. 
Overheard on the elevator the other day:  "Why do you think she has that bandage on her head? Poor thing! How sad!" 
Who would've ever thought it?  
I listen to the voice mail from the caller I avoided. 
They say they hope I'm feeling better, that they are praying for me and sorry for not calling sooner-but they've had their own issues to deal with. 
Really? Who says that? 
I've had my own issues too--like having my skull cracked open.
Bitterness slips out of my mouth-as soon as I say it, I admonish myself for being so self-centered. 
This is MY world--not theirs.  Everyone has their issues. 
Funny how mine are more important to me and I'm okay with that..but I resent it when others behave in the same fashion- placing priority on their issues. 
How can they act normal when I'm suffering over here?  Can't they see, hear and feel my suffering?
Now, not only do I have foreign objects in my head, but I'm selfish too. 
I slip down a few rungs on the ladder of despair and cry more. 
This is getting out of hand...and my head hurts like hell. 
I silently pray for forgiveness for my self-centeredness, for using profanity both silently and audibly, 
for not being more grateful and I ask for God's help with the bitterness, the sadness and the disappointment with myself and others.  
I turn off the light and try to nap. There is no comfortable way to rest my head.  it feels like one big, throbbing bruise.  So, I cry some more. 
Hot tears on my cheeks make my face feel tight..I hear my own voice in my head..
"No one quits--No one quits..Not today!"

I know my writing is usually a bit more informative, more fact related, more educational...and I'm sure I will get back to that. For now, this is my outlet. As my body physically heals, 
I also need emotional and spiritual healing. 
I feel my life has once again been spared.  I am seeking purpose in all of this. 
If you have been where I am, I hope it helps for you to know you are not alone. 
Some of our Chiari sisters have taken their own lives because of the pain, isolation, feeling they were a burden.  We all have these thoughts cross our minds.  We are all subject to despair, sadness and shame.   I hope you find refuge in my writing and I hope on your darkest days you are able to look in the mirror, wipe aways your tears, pull yourself together and say, "No one quits--No one quits..Not today!"

Friday, April 25, 2014

Photos From Brain Surgery #2

I would like to say I'm pleased with this incision but it's just as barbaric looking as the first one.   The pain has been ridiculous most days. The first five or six days were constant facial pain, eye pain and what I call brain spasms. - an intense squeezing in my head thought to be related to low CSF - untouched by pain meds.  Because of surgery being in the sitting position, my face has felt like each bone was broken. Even moving my eyes from side to side was excruciating.  That has calmed down quite a bit.  My entire head is very tender still but each day shows marked improvement. 
Apparently, some type of clam was used on my neck. The brown on here isn't dirt. It's actually bruising from the head holder. 
Also- a Mayfield fixator  was used which means 3 tack like things where positioned and tacked into my skull to hold it still. These spots are just inside my hairline near my temples and one in the middle.  They are very swollen and painful still , and today is day nine.

Obviously these pics loaded out of order. The bandaged pics are on Day 2 post op and the lovely in bandaged ones are Day 6 postop. 

I plan to post more tomorrow. 

"Politics makes strange bedfellows" -- Charles Dudley Warner

I guess we've all heard this famous quote by C. D. Warner. 
"Politics makes strange bedfellows." 
Honestly, I had to look up the quote to see who actually said it. 
I've spend the past 12 days either preparing for surgery, being tested for surgery, having surgery or fighting off the pain of surgery. 
What does this have to do with politics?  
It's more the "strange bedfellows" I'm  rolling around in my head. 
The invisible tethers that lately have bound me to total strangers-
Ties that are strong and unbreakable that will join me with people I would have never met otherwise. 
Friends/family of choice rather than blood lines or acquaintance. 
I feel blessed, fortunate and smiled upon by God to have met these bedfellows.
I see just a glimpse of what He has in store for me through them. 

I'm not a typical person.  At least I don't think so.  I'm not saying I am above or below average. 
Just not typical.
I grew up in a small, rural community. I had friends there, but never felt I belonged there. 
I yearned for bright lights, big city...excitement, culture, to see things, go places, experience the world. 
I've done just that. 
I've lived quietly in the country and out loud in the city, 
I've gardened, homeschooled and made my own bread. 
I've traveled, stayed put and broken free. 
I've traveled by train, plane and automobile, 
the Metro, the Tube and the Subway. 
I've met strangers, found friends and acquired family of choice. 
I'm blessed. I'm fortunate..and I am real.
 It's the "being real" I'm most proud of. 

So now back to the bedfellows....
Having an obscure brain disorder (or in my case, disorders) has been more of a blessing than a curse. 
I've met the most amazing people along the way. 
A few weeks ago I wrote of finally meeting Katrina.  
After about a year of online banter, we met for lunch. 
Then she opened her home to me. 
Opened her home. She picked me up at the airport, took me to her home, I had my own little cabin in her backyard. She fed me, took me to my doctors appointments, had a birthday breakfast for me (with the help of her friend Misty-whom I love, love, love), transported me back and forth from Houston to Dayton to Baytown to Dayton to Baytown..(you get the picture).
I was treated as a queen.  The kindness of a virtual stranger touched my heart in ways I will never be able to fully express.
I sat there, looking at her on my last day at her home..thinking of some of my "lifelong" friends that have never shown me this much kindness, this much love. 
What makes the difference? 
Is it the brain thing? Is it merely the fact that we have similar zippers? If we had met under other circumstances..would we be friends? 
I'd like to think so. 
Is it because we are both realists? Both givers? Both loyal? 
Or because we both know what it's like to be hurt by those people you expect the most from? 
I think it's because we know what it's like to look fear in the face, to not take good days for granted, 
to cry in the shower so no one hears, to feel abandoned by "friends", 
to feel like a disappointment to our spouses and to feel guilty for complaining about our problems when we know things could be so much worse.
I think it's all of the above and even more. 

I'm nine days post op today for my second craniotomy in sixteen months. 
My body is tired, broken and sore. My spirit is wounded, worn and bruised. 
So forgive this melancholy post about bedfellows. 
Attribute it to the pain meds, lack of sleep  or cabin fever. 
But do me a favor- be real. Take it to heart. Pay it forward. 
Either be all in or all out. Be a friend or don't.  Identify who you are to others, who you portray yourself to be in their lives..and be THAT.  You can't be a BFF and not rise to the occasion when the going gets tough. If you can't follow through, get out of the game. 
If you don't promise what you can't deliver then no one gets hurt. 
Everyone is in need of (and deserves) grace. 

So, Charles Dudley Warner, I beg to differ.  You stated, "Politics makes strange bedfellows." 
I think you are quite wrong. 
I think REALISM makes strange bedfellows. By exemplifying the Golden Rule, following through, offering grace, doing the right thing, showing even the merest form of personal integrity,
We set ourselves apart, strangers to the majority of the world...
When we meet a kindred soul, it doesn't matter the situation, background, race, sex or social standing. 
We become bedfellows. 
We've made our bed--now we have to sleep in it. 

So thank you, Katrina. 
Yes, we are linked together by this  enemy we call Chiari- 
But your personal integrity, kindness and love for a virtual stranger have made you my sister. 
I'm so honored to call you my friend. 

Thursday, April 10, 2014

What Did You Say To Me?

Did I Hear You Correctly? 

What did you say to me? --
My husband and I laugh a lot.  Like, a ridiculous amount. We have so many inside jokes that some days our entire dialogue is baby talk, movie lines and our own little unique sayings. 
One such saying is, "What did you say to me?"
It's not what we say, its how we say it. 
and it's only funny if 
I can hear it.
One of the symptoms I deal with continually is hearing loss.  
Initially, after my decompression last year, my hearing was greatly improved. I could hear birds singing. I could hear leaves rustling in the trees. I could hear the dryer beep when it was finished.  Currently, I can hear none of the above. I can hear fine conversationally, as long as I'm in the same room with someone. I knew my hearing was decreased, but until I had it tested yesterday at work, I didn't know the extent.  
I have a PRN  job working as an occupational health nurse.  One of my duties is to  perform hearing tests on our clients that come in for physicals.  As part of my training, I had to go through the same testing so I would understand what it's like for the client. 
I was SO embarrassed after my testing yesterday. 
I failed my vision test with and without glasses. 
Tonometry test showed increased intraocular pressure.
and I totally demolished the hearing test. 
Below is a chart of hearing thresholds. 
Most of mine where at 40dB/HL or greater. 
I even had some 55 and 60db/HL. 

Degree of Hearing LossThreshold Hearing Level (dB HL)Effect on CommunicationUse of Hearing Aids
Normal−10–15no hearing impairment 
Slight16–25speech understanding not affected 
Mild 26–40speech understanding reduced, especially in noisy environmentsmay be helpful
Moderate41–55conversation noticeably difficulthighly beneficial; strongly recommended
Moderately severe56–70speakers must raise their voice to be heardessential
Severe71–90conversational speech cannot be heardof less benefit
Profound91 or higherdeafof little benefit; cochlear implants may be considered 

How depressing!! I know it's just hearing loss..but I failed ALL of the tests. Even my EKG was abnormal!
Sometimes I think these symptoms, this pain, the dizziness is all in my head. 
I mean, I was told that for years.  "There's nothing wrong with you..the doctors can't find a thing-it's all in your head!!" REALLY was and still IS all in my head. 
Grasping a second surgery is still very surreal.
I look forward to the pressure being relieved and being able to hear again. 
I don't look forward to the whole having my head cut open part. 
That's the downside. 
Upside- I can get back to being a bit more normal.
Six days sports fans. 
Six short days.
Counting them down and making the most of every one.

Monday, April 7, 2014

Freezing Up and Moving Forward

Have you ever felt frozen?
I don't mean like outside waiting on the local Christmas parade, drinking hot chocolate with numb nose, fingers and feet-
I mean-Frozen.
Frozen in a moment.
Still able to move, to act, to function-
But frozen inside.
When I was younger I had vivid dreams of Indian tribes with strange death rituals.  I have no idea why I had these dreams..I've never been a huge Indian buff, don't think I ever painted my face or did a rain dance...Anyway, in my dreams death was always the same...the soul stayed trapped inside the immobile body. Complete awareness of surroundings was present, yet no sound could be uttered or movement made. Trapped.  I remember wrestling myself awake from these dreams, for fear I was actually among the deceased indians. I remember forcing screams from my mouth that apparently only came out as a whimper. I was frozen.
And I was ALWAYS happily relieved to awaken into the world of living, breathing, moving, talking humans.
Later I was told some people have this same trance-like dream state. Some call them night terrors . 
I call them...CREEPY.

For the past few days I've had quite the opposite phenomena going on.
Perhaps these are day terrors.
Or life terrors?
Or Chiari/Arachnoid Cyst/I-can't-believe-I'm-having-another-surgery terrors.
I feel frozen.
But this time, I'm frozen inside.
I'm moving, talking, laughing, writing, smiling, crying, texting on the outside and completely paralytic on the inside.
Currently, I'm sitting on my bed with two calendars open, three notepads open with various to do lists in progress.  Call the vet to board the dogs, finish the taxes, finish my daughter's FAFSA, pack for Houston, call the hospital, make a hotel reservation, renew my nursing license..and this list goes on and on.
But I can't get going.  I do one thing..then I sit and stare.
Then I go look in the mirror and mouth to myself.. "SNAP OUT OF IT"
I go back, I look at the list..the one item I accomplished isn't even on the blasted write it down, then mark it off (you know you do the same don't judge me).
Then-I read over the list and look for the most appealing task. 
And     my    mind     goes      completely         blank.

Why am I telling you this?
Here's the part where I remind you that you chose to read my blog...and I make no apologies for how I choose to process my life these days.
My best guess on how to make any progress this week is to just spit out whatever I am feeling so I can move on.
So in an effort to somewhat sanely "snap out of it"..I'm going to to take thirty seconds to type/ramble the uncontrollable stream of thoughts going through my pressurized brain:

What if I don't wake up from surgery? What if I do wake up? What if this doesn't work? What if it does work? The dogs need a bath. Who will pick up the dogs? What if I can't work again for six months? We are out of blueberries. What if my business doesn't grow? I've got to finish the taxes. I hate taxes. I hate being alone in Dallas with no close friends. Do I have any close friends? if so, where are they? They are going to cut my hair again. At the end of the day does anyone else really care? Do I care if they care? Am I a bad person? Am I crazy? Why is Bob vacuuming? How can he vacuum while I'm dying inside? Putting this hair clip in was a huge mistake. Why are we out of blueberries?
Okay-time's up.

Actually I feel better, sharper..not as fuzzy and abstract. I owe a debt of thanks to the writing workshop I attended in Petaluma, CA this January that told me about that exercise. Can't believe I didn't think of using it before.  I just created what Marie Forleo calls "mental white space".  It's lovely here in peaceville. 

Now I can get down to the real business of the day.

Okay. Nine days and counting.

If you are confused by the NINE days, don't think the stress has affected my mathematical skills.  Surgery has been moved up a day to April 16th. 
Yes- for those of you that know me pretty well.
For the love of buttercream icing! Could this become any more tragic?!

I must admit when the nurse called and changed the date. I felt this ominous dread come over me.  I've shaken that off and am looking at it now as the past 45 years end that day and the next 45 begin.  The first 45 were always hindered by my limited brain function..just imagine what I can do with the next 45..with my brain firing freely.  Watch out world! Here I come!

(aren't you loving the way my attitude has shifted with all of this extra mental white space..)

Now a little recap of our weekend.  We attended the 1st ever ASAP (American Syringomyelia and Chiari Alliance Project) DFW support group meeting..which I co-hosted with my new friend, Simone.  We had a great turn out. How nice to meet others who deal with the same issues as I! We had a great time meeting these sweet people, hearing their stories, swapping doctor info, medication info, treatments, etc.  Each of us brought something unique to the table, however, we all shared the same Chiari thread.  I came home from the meeting with the worse headache in weeks, climbed into bed and was actually in bed for about 14 hours.  When I woke up the next morning-I was ashamed of being so pathetic.  Who stays in bed for 14 hours with a headache?  Then we packed up our things and went down to Waco for lunch with friends, to check on our house and to see our sweet grandson. 

Sometime during the drive, Bob and I reflected on the ASAP meeting.  I made a stark realization.  I was the only Chiari kid there that doesn't take scheduled medication.  THE ONLY ONE!  I take PRN (that's nurse for: as needed) pain meds and muscle relaxers-but that is IT! I take a few supplements that I now believe are the reason I don't take regularly scheduled medications. I take D3, B-12, Juice Plus and Protandim. I rarely mention these supplements, mainly because I don't want to sound salesy...because this blog is not about my business or my income..but I believe these are key factors in how my cells are functioning. I feel like I'm hoarding this knowledge and that I should be helping people more and worrying about sounding salesy or preachy less.  So there it is....I like to take the natural course of action whenever possible.  I wish there were a natural choice for hydrocodone..because taking white willow bark just doesn't do the trick.

At the core of who I am-I just want to help others.  I do write this blog for myself-but I share it with you FOR you. I share it because people tell me it helps them personally, it helps them relate to their spouse or their children. I keep writing because I have to have a voice. I want you to have a voice. I don't want to be alone in this crazy fight within.  Those of you that comment and email  keep me are invaluable to me.

For many years, I was voiceless. I was ashamed of my health. I was told what a burden my health (mainly health expenses) was to others. I was called lazy and stupid.  I know that inside...I'm not lazy. I'm not stupid.  I know that it's okay to be frozen for a little while, to whine a bit and be afraid. I also know that it takes strength to say scary things out loud and to move forward even if what lies ahead is unfathomable.  

So I'll keep rambling, writing, freezing, making mental white space and moving forward.

Final thoughts for the morning from Season 5 of Grey's Anatomy for my dark and twisty friends--

"If there's a crisis, you don't freeze, you move forward. You get the rest of us to move forward. Because you've seen worse. You've survived worse, and you know we'll survive too. You say you're all dark and twisty. It's not a flaw, it's a strength. It makes you who you are."

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