Tuesday, April 30, 2013

Dry Needling...Wow!

So..I had an emergency PT visit yesterday.
Isn't that crazy..?
My neck and shoulders were so knotted up, and I was in so much pain, I had to call Neil.
He offered electrotherapy and heat over the phone, however, when I got there, he had talked with Dr. H and got clearance to do dry needle therapy. 
It feels like this..
If you've had acupuncture, you know what "the tap" feels like.. if not, it's like a tiny needle prick into your skin, not too painful..but not fun.

SOoo..with dry needling..the needler (Neil), squeezes the muscle around the spasm to locate the exact pressure point, taps the needle in..then moves the needle in a round motion. The muscles jumps and spasms and it honestly feels like there is a crow bar in that pressure point. Neil and one of his henchmen are holding my shoulders and arms down..and I, of course, am crying.

However, when the torture is over..he sends me to "the table" for
heat and electro-stimulation.
For the first time in about 6 months...during that brief walk to the table..my shoulders and neck are completely relaxed...NO SPASM.  yes, the surface hurt from the needles..but no spasms..
And they didn't return for several hours.
So the plan is to go through this torture enough times, hitting enough trigger points to permanently release the spasms. 
Last night, I was in a moderate amount of pain..which lasted through the night and into the morning.
This morning, for the first time, I applied Plexus' Fast Relief Cream and got instant muscle pain relief.  Very encouraging.  Now the surface is still sore to the touch and I'm bruised and swollen..
but I finally feel like I can lick this thing and get back to a normal life...FINALLY!!!

SO today..I go at 11:00 for more dry needling and the table...and the painful touching.
And I must say, though I know it will be a few hours of pain..I'm looking forward to it.
I finally feel like I have hope to get back to normal life.
And I'm so darned ready for it!

Saturday, April 27, 2013

My Chiari Saturday--

This is a pretty cool diagram of what surgery is..I borrowed it from Maritza's All About the Brain Chiari Awareness and Education page on Facebook.

We are fortunate that our brain surgeries are minimally invasive and there is no Dr. McDreamy digging around in our frontal lobes. That being said..the surgery does affect our entire brain due to the rearrangement of CSF and our brain moving and changing to fill up its new space. One analogy is that of a dry sponge having water added to it.  Our poor, dehydrated, shriveled brains have new life (or CSF) breathed (or poured)..or forced into them.  Our brains resist the change.  We all resist change..why should our brains be any different?  Once our brain has adjusted..then our bodies must adjust. For years we have postured ourselves to accommodate this silent birth defect, so now, our heads, necks, spines.shoulders, jaws, backs, hips, etc all have to realign, regroup and relearn.

I'm in my 4th post op month..and where it's better in many many ways...it's worse in others. I fear I will never be able to work as I once did. Pain is my constant friend. I have much joy, I also have much sadness. I am tired of this.  Then, I feel guilty for feeling that way. I could have a terminal illness. (I should be careful about that term, as of late, I've read 4 obituaries about Chiari-related deaths...that's pretty darn terminal)...but you know what I mean.  I should be more grateful.  I purpose each day to be more grateful..I generally wake with much enthusiasm, then turn into a bobble head before noon.  Very frustrating.

Today..I awoke to muscle spasms..Tense, tight, ridiculously uncomfortable.  My muscles are simply angry with me. I'm talking to them in my sweetest voice, "C'mon guys..can't we all work together?"
They ignore me...like rebellious teenagers refusing to turn down blaring music.  So I go out in the back yard...and yell at them (in the infamous words of Rodney King), "CAN'T WE ALL JUST GET ALONG????"    I get no response..So, I fix my cup of coffee with French Vanilla Coconut Milk creamer (I've read muscles like coconut milk)...settle into bed with my laptop..and write it out. I'm contemplating heat, a Valium, and maybe a call to Neil..if he's in the office this morning..I'm sure he'll let me go to the torture table.  I'm awaiting the arrival of my new Fast Relief cream and pills from Plexus as they are supposed to be just the thing to show Valium the door. 

And so I wait, and I pray..and no relief.  I look back over the surgical procedure diagram for reassurance that this is supposed to hurt..that it's not in my head (no pun intended)..and I try to relax.

Can you feel me relaxing?...I'm taking long pauses in writing, deep breathing..relaxing my arms, my head (still using my "monkeydog" pillow that Tami gave me..it's wonderful) Right now I want to get out my copy of Eat, Pray, Love by Elizabeth Gilbert..not that I want to go to an ashram in India and practice the Hindu religion..it's just this one chapter she wrote on meditation..on how she conquered her body's resistance to total relaxation, relaxing her mind and quieting her spirit...just being.  I love Ms. Gilbert's style of writing, I don't agree with all of her beliefs, but this chapter spoke to me. I think of Psalm 46:10: "Be still and know that I am God" (NIV)...since I can't be still...I cross reference it with my parallel online Bible.
This is what I get:  "Be still, calm and know that I am the True God.." (The Voice)
                               "Cease striving and know that I am God..." (NASB)
                               "Let go of your concerns! Then you will know that I am God!" (GW)
                               "Stop fighting" , He says, "And know that I am God" (GNT)
That one gets me..."stop fighting". Am I to just give in to the process? A still, small voice whispers inside of me, "Yes--I've got this..."   And honestly, a peace floods over me.
So I'll close with that peace, with my coffee and coconut milk and my monkey dog..here in the silence of the house..because aside from the struggle and the pain..above all else--I do know that He is God! And..that my friends, is enough!

Friday, April 26, 2013

From Traveling to the Torture Table...More of the Chiari Tale

Today is another bad Chiari day.
I had PT..and it was no fun.
I'm tired of feeling like a bobble-head.
I'm tired of being tired of feeling like a bobble-head.
I'm tired of valium and norco.
I'm ready to be doing something besides giving constant updates on my brain, my head, my neck and my upper shoulders.
Today, I even had dizziness and trouble speaking again.
Is there an end to this?
Do I just do my best to make peace with my life being like this?
Am I EVER going back to work?

Now, I love my neurosurgeon..however, he GREATLY underestimated my time off work. 4-6 weeks..
That's a pipe dream.
If any of you were off for only 4-6 weeks..you are my hero and I want to know your secret.
I've been off work for 3, count 'em, 3 months.
My work is being good about it..but come on.
 Bob and I with Notre Dame Cathedral in the background, on our bridge over the Seine.

I know, I just got back from a week in Paris...which my doctor encouraged.
Then I get back and I've gone backwards in recovery.
I did too much.
I was in Paris, dude,...what did you think I would do?
I walked around the beautiful city, stopped when I was tired..got plenty of rest.
We flew first class..so very comfy on the plane.
I carried no luggage.
What do you want from me?

Now, I'm in bed..10 mg Valium + Norco 5mg + Ibuprofen 800mg..My head is fully supported..and I'm miserable. Every muscle in my head throbs. My neck aches. My shoulders ache..and I'm constantly tense.

I'm no fun for anyone..and I just want to cry...cry...cry.
So, if you are reading this to feel better...stop...this isn't the day. I've got nothing good to say.
My positive attitude may return in the morning..but not today.
My Constricted Cranium is getting the best of me...and I can't will it to stop. 
I cringe when I think of more PT on Tuesday..the potential of accupuncture that day..and maybe starting with a TENS unit....and the certainty of spending time on the torture table.

Me on the torture table.

I'd love it if you would share some of your recovery woes.
I know we try to be positive and supportive.
Right now..misery needs company.

Tell me...What is your recovery like?

Tuesday, April 23, 2013

I'm sick of Chiari

I am sick of Chiari.
Because of Chiari I am sick.
I am mad at Chiari.
I'm angry that it's taken so much of my life.
How can I be mad at something so intangible?
If I'm mad at Chiari...does that ultimately mean I'm mad at myself?

I guess I am mad at myself.
So let me tell you about this time I was getting a massage, way before I was diagnosed.
Well, first--a little background-
I always had horrible neck muscle issues and every massage therapist had to comment on the knots in my neck.  They all had to tell me how bad it was for me to be under such stress (no one ever thinking, "hey, maybe her brain is screwed up and its making her hold her head weird and that's causing the muscle spasms"). In my mind I blamed my controlling ex-husband and my teenagers for the stress.
However, ultimately...I despised that I had these aches in my shoulders and neck.
And I further despised that it had to always become a topic to be discussed.
Massages were supposed to be soothing.
Soothe me damn it!...Don't critique me!
So I finally got to the point that prior to a massage, I would just tell the therapist all of my bodily flaws..It' was a rote verbalization..like in Ferris Bueller's Day Off..: "Bueller.....Bueller...Bueller.."
" back is screwed up"
" neck is screwed up"
"spine is curved abnormally"
"hips are crooked"
 "I can't take deep massage pressure, because, honestly, It hurts to even think about you touching me--that's how screwed up I know I am"

So, like I was saying,  this one time, as I'm going through this list, the therapist sticks her hand up, stops me and says, "Oh honey, love your body, say good things about it, it can hear you".

I was so caught off guard that I burst into tears. I did dislike my body.
My body,
My inability to stick to an exercise plan.
The sniveling weak submissive excuse for a woman that I became in the presence of my ex (then current) husband.
I hated many things about myself.
I had to work at saying positive things..and it still didn't happen very often
SO- I hated that about myself too

I finally divorced the ex-
Did over a years' worth of grueling in depth therapy.
Learned to love me.
Allowed myself to love someone else and to be fully and completely loved.
Yet I still have trouble loving my body.

I'm embarrassed to admit it.
I still have a very negative self-image.
I'm still mad at myself.
I'm not sure why.
I want to fix it.
I don't know how.

I just want to be well.
I'm just tired of not being well.
I know it's selfish when others are so much sicker.
There are much worse illnesses.
I am just tired of being the sick person.
I just want to scream.
And hit something.
..and take a really really long nap in which I wake up and everything is right with the world..and my head doesn't hurt.

I'm sick of Chiari.
Because of Chiari, I am sick. 

Sunday, April 7, 2013

Chiarian I am...Sleestak I am not!


Remember these guys?
Think about it...
That's right..these are SLEESTAKS.
Sleestaks were the scary creatures on Land of the Lost.
Scary, creepy..and looking back at them now..pretty corny and goofy looking.
I haven't thought about a sleestak in years.
Until last night.
Our friends were over, helping with last minute wedding preparations..and somehow we got on the subject of my blogging.
Our friend Jason said, "Please quit saying "Chiarian--It sounds like some kind of creature". 
Of course we laughed.
I protested,  "But that's what we are.."
He said, "No- not anymore--you're fixed".
I briefly tried to explain that Chiari isn't cured...and blah blah blah...and he argued.
All in fun..but it's been on my mind ever since.

Using the term "Chiarian" makes it sound like we are cult members (like Branch Davidian --it's okay, I live in Waco..I can use this term).
Are we cult members?
Have we moved into our own subset of society?
We are not worshipping or praising Hans Chiari.
We are merely bonding with others in an effort to get through this with some sort of sanity.
We laugh at our surgical wounds..call them zippers...we call ourselves "Zipperheads"
See..you can be a Chiarian and not a Zipperhead.
Getting the Zipper installed..it's a big deal.
Yes..basically our skull is split open and a glorified seamstress cuts, stitches and glues our dura (covering of the brain), in an effort to return our lives to some sort of normalcy. 
We don't get "CURED".
We get better..or most of us do.
Some need more surgeries later, some are symptom free for months or years and then they regress and are back at square one.
And lately, I've learned of four Chiarians that passed away due to "complications of Chiari".
Chiari is a force to be reckoned with.

Being a Chiarian is more real and personal to me than being an American, a native Mississippian, a neo-Texan...or even being a Republican.
I don't mean to sound like a cult member or conjure up images of creatures in the mind of others.
So don't think of us as sleestaks.
Chiarians look as normal as anyone else, which really hinders us in getting treatment.. (like my ex-husband always said, "You don't look sick".)

I've been racking my brain (no pun intended) all morning for another group of patients that label themselves like we do..cancer patients aren't cancerians,  Alzheimer's patients aren't Alzheimerian's and people with Lupus aren't Lupusians..the closest I can come is diabetic and that's more of an adjective than a label.  This observation by no means minimizes the condition of the people that suffer with these diseases..it's just a point to ponder.

Those of us with Chiari Malformation are unique. We like the label. We like the comaraderie..we need it like we need air. No one else gets it.Without our brothers and sisters of Chiari, we wither into states of depression and despair.  No matter how much love and support we have from our friends and family..looking into the eyes of another Chiarian can not be rivaled.  There is an indescribable connection..because we know at the core of our being that in that moment we are understood..the person behind those eyes truly "gets it". 

In my work as a pediatric nurse, I've been blessed to meet a few Chiari patients. I've walked into rooms of families praying over their child and prayed with them. I've looked into the face of worried moms and crying grandmothers counting the minutes until they send their child into brain surgery because of this strange and unique condition.  I've introduced myself..which is always uneventful, but the second I say, "and I have Chiari Malformation Type 1"..the entire tone of the room changes.
I'm no longer a nurse...I'm a friend...I'm family...I, too, become a warrior.  What a priceless and unique position for me to be in. 

SOOO..I guess my point is this.
I love our friend Jason..I'm not offended or hurt by his request to stop writing the word Chiarian.
His comment caused me to really dig deep into who I am...or who I am now.
I'm thankful for that.
I adore people that make me think...they propel me to deeper understanding.
However, I'm sorry sweet friend.
I can't stop writing it.
The fiber of my being bears the inscription of Chiari-

Hello, My name is Michele
and I am a Chiarian.
I became a Zipperhead on January 23, 2013.
and I thank God I don't look like a Sleestak.

Friday, April 5, 2013

Did I Mention My Head Hurts?

My head hurts. 
I got all enthusiastic about cleaning house..(did I mention I'm getting married...HERE?...AT MY HOUSE?..in 8 days?
I just wanted to scrub the baseboards and the floors.
Hardwood floors + Chiari=NO  BUENO!

SO now..I have a raging Chiari headache.
I'm 10 weeks post op... can I catch a break?
I shouldn't say that..I have "caught a break".
I got diagnosed.
I finally found a neurosurgeon.
I had surgery.
I survived.
No complications.
I have no reason to complain.

However..I am human...and a female.
Therefore, I must complain.
It's just my nature. 

I'm amazed at the difference in recovery times and methods from person to person.
Dave from the blog Dave's Big Brain..is already working again..his surgery was AFTER mine.
However..he was in the hospital for a week or more (right Dave?) and I was in for 2 days. 
Maybe if I was hospitalized longer....hmmmm...
I try to find a common thread in this crazy Chiari world, but there is none.
Chiari is its own entity doing with us what it will..at it's will.
We try to have some feeling of control, but we have none.
While, yes, we have this disorder to live with, contend with..to literally fight..
We are very fortunate.
In the past week I've read of four Chiarians losing their battle.
All said, "....from complications of the Chiari Malformation Type 1".
It's a sober reminder that while we laugh and joke about our zippers. constricted craniums or big brains (hope you don't mind, Dave)..our bodies, our minds, our total beings are in an all out war.

So as I sit here, looking at all of the things I need to be doing..with my head pounding..and almost crying because I am so tired of the rollercoaster...
I'm carving out a grateful notch in my spirit.
Thank you, Lord for allowing me to continue to fight and
Please keep reminding me when I'm frustrated, like right now,
that there is a method to the madness..You have a purpose and I
am blessed beyond measure.

Thoughts on Friendship from www.makingittohappilyeverafter2.blogspot.com

Love, Loyalty and Friendship (alternate title: sometimes friends suck)

(Not a Chiari post--but I'm recovering and thinking about all of these tangents of life--so why not share them with you?)

There is a common problem in America.
No..not just America..I think it's a world-wide pandemic.
No loyalty.

OR--it could also be called-
"You just aren't that freaking important to me"

Whatever it is- I struggle with it.
My mom and I had a discussion about it just this week.
She taught me to be a good, loyal friend.
She taught me to think of others first.
She taught me to defer to others..to put my wants, needs, desires, feelings, beneath others.
I was taught to not hurt feelings, to eat whatever I was offered (when I'm a guest) and to not ruffle feathers.
I guess it's a fine line-because-the flip side of this is becoming too submissive.
I submitted for twenty years to a man that abused it.
I lost my voice.
(Thank God a search party was finally sent out and I found the damn thing..now I can't shut it up!)

I was taught that a friend is a friend is a friend.
Every one wasn't taught that.
I've taught my children the same thing.
It has resulted in both of them being hurt over and over and over.
They (like myself) expect good of people.
They expect others to be loyal and true.
They expect  that other people care.

Now, don't get me wrong.
A few people DO care.
Most do not.
They say they do, they profess undying friendship..
Then-when you need them the most..or you make a mistake..they are outta there.
Let's face it, we all make mistakes. We misspeak..we have a bad day, we snap.
Then, we go to that person, admit our fault and ask for forgiveness.
In my past, (not to toot my own horn), I've done this.
As soon as I have one small, minute, ill thought or speak an ill word..the Holy Spirit slaps me.
I just CAN NOT DO IT and live with myself. Even if I know the other person has wronged me.
My problem is this.
I have no problem apologizing or asking forgiveness. I have had a lot of practice.
Yet, I can count the number of times it's happened in reverse on one hand.
I usually just let it go.
But I'll tell you..it's getting harder and harder to just let it go. 

I want to understand what makes people tick.
I want to understand the person that thinks you owe them something. 
I don't mean respect or well treatment.
I mean the ones that say, "After all I've done FOR YOU.....".
Hello?  I thought we were being friends...had no idea you were keeping score!
SO, what?  I owe you something?
I owe it to you to not let your words sting..or not expect you to act like a freaking adult?

Do unto others as you would have them do unto you....
Would you want me to present you with a list of what you owe me?
No--you wouldn't.
and honestly,
the times in my life I've heard this--it has totally changed the face of the relationship.
At that point, the relationship goes from friend to employee.
It goes from easy to "oh, I hope I don't seem ungrateful again".

What makes a group of girls be best friends with my daughter one day--
and then Tweet slander about her the next---FOR NO REASON-

My mom, almost 70 years old, has the same problems.
What causes your friends to be at lunch laughing with you one day..and then
spreading malicious rumors about you the next...and these ladies are obviously grown ups!

What happens? We get hurt.
We want real friends.
The ones that don't let you down..or at least, when they do..they own up to it.
None of us are perfect, plans change, lives change, moods change--
But my gosh--own up to it and be real.
Maybe that's it...
We (I know there is more than just my family) want honesty.
Be honest.

Do I offend you?
If so-why?
Am I too "in your face"?
Do I not lie enough?
If you ask me how I feel do I tell you...
Or is it because I've quit saying, "It's okay..it's really okay that you let me down"...See..that's a lie...and I'm refusing to do it anymore.

Now, this has always been an issue for me.
I have very few (maybe one) friends that have stuck with me consistently over the years.
Now, this one, our relationship has ebbed and flowed with family constraints, raising children, etc--but it's always been real. 
Now, at age 44..I treasure it.  I know I can count on this friend.
The times plans have changed..she has called and apologized and genuinely stated her faults and we moved on.  I've done the same with her.
Mutual respect. 

Maybe it's a respect thing..
This is what I know..
If someone continually tells you what a great friend you are...Watch out!
A  true friend (like a true Christian) doesn't have to tell others what they are.
Others know from actions. 

I know I'm rambling--this is just an issue no one addresses and lately, it's really hitting home with me and causing some major hurt.

I want to delve deeper into this thing called "Friendship"--what it is...what it is not...
How much disappointment is merely unmet expectations?
When do you call it quits on a friendship?
And how do you let someone go that you have invested in?
How do you turn off your love switch? I think mine is broken, because I can't.
Once I love someone..they are in with me and our souls are joined.
At least, I think they are..why do others not?
Am I just needy?
Or am I merely honest and realistic?

Perhaps this is all part of my brain healing from surgery..it's overactive..
However, I plan to research this concept of "friendship"..
Maybe I'll even have a friendship seminar..write a book...or better yet...a curriculum.
I could have t-shirts printed and maybe bumper stickers.
"Be a forever friend...not a fake friend"..
"Friendship is non-negotiable"
"I'm friendly...Why aren't you?" (I like this one best)

And that, my friend (a term I use loosely)--is all I have to say on this subject for today.

Tuesday, April 2, 2013

Still Recovering

Bob and I are getting married..in 11 days.
We are having a beautiful, but small ceremony in our backyard with family and close friends.
Then we are going to Paris for a week...then..hopefully, I will be able to go back to work and have a more normal life.

While trying to define the feelings I've had during the past few weeks..it's really difficult to find a label.  I've been lonely during the day..felt insignificant, felt sorry for myself, felt joyful. I've had many moments of ..."WoW...so THAT's what it's like to feel normal".  I've never asked God, "why me?'..because honestly..I don't care why. This is my path..it's crooked and broken..and let's face it, it could use a little highway maintenance..but it's my path and I'm traveling it as best I can.

I've decided to stop wanting to be a writer.
I'm just going to write.
I'll write, and write and write...and maybe, one day..someone will read it and it will move them. 
Maybe one day..even just one word..will move the heart of another in some positive way.
But for now..it'll just write.
I've have two more blogs.
One is about my life, www.makingittohappilyeverafter2.blogspot.com -I warn you this one can be graphic-it was started as a therapy tool when going through my divorce,  and the other is about my new infatuation with flying, www.andsosheflies.blogspot.com

I feel like I have another blog in me..I need to voice my feelings on my Christian walk, the journey, the friends and teachers I've met along the way, the pain that resulted from the relationships and the total agony of trying to make sense of it all.  I'm pondering this.. I'll let you know when I decide to start it.    My identity..which I've hidden until now on this blog is Michele Robinson. You can find me on Facebook..and remember, my name will change in 11 short days to Michele Robinson  Collum.