He can't heal what you won't reveal or cleanse what you won't confess.
Think about it.

Repeating wrong behaviors guarantees continued failure.




These lyrics and this song have been on my heart a lot lately...
It amazes me how true and honest Andy Hull is about his journey and struggles with his faith in God and beliefs! He writes it and sings it so well IN ALL of his music!

Manchester Orchestra... The River... :)

I will fight the spirit

With a sword in my side

She found a way out

Crack my rib

Wait to die

I think I know YOU best when I sleep

I think I know everything

Me and my brothers

We have tongues sharp as knives

I found a way out

Make a noise, close your eyes

I think I talk to YOU best when I sing

I sing about almost everything

Oh GOD I need it

So let me see AGAIN

Take me to the river
And let me see AGAIN

Oh my GOD

Let me see AGAIN

Oh my GOD

Let me see AGAIN

Let me see AGAIN

Grace taught her daughter

Daily on

GOD how I feel it

Fed her pride to YOUR feet

I'm gonna leave YOU the first chance I get

Oh GOD I am sorry

Well I was wrong again

Take me to the river

And make me SING AGAIN

Oh my GOD

Make me clean AGAIN

And oh my GOD

Let me see AGAIN

This song is me. This song explains my journey so well. It's how much I ask and scream and cry out to GOD and tell him to please help me please LOVE me please show me YOUR way...

The verse, "I'm gonna leave YOU the first chance I get" REALLY speaks to me... I feel like so many times GOD is working wonders in my life and I do just this thing... Leave him the first chance I get... I cry everytime I hear that verse... Its so moving... 

Listen to this song! Its amazing! I cry EVERYTIME I watch it. He speaks to me in so many ways through this song!

http://www.youtube.com/watch?v=GY4-NawPgbs

 

 

Last night I talked to a realllllly really GOOD old friend. Its been quite a few years and it was over faacebook IM but he told me so much of what I really needed to HEAR!... Here is what the Spirit was wanting him to share with me.

 

-“Therefore, behold, I will hedge up your way with thorns, And wall her in, So that she cannot find her paths. She will chase her lovers, But not overtake them; Yes, she will seek them, but not find them.
(Hosea 2:6–7)

-I just felt the Lord saying He's been hedging ME in. You have sought other lovers and He's been after you and now He's calling you to return to His with everything. I fell like the pain you're feeling He wants to take and show you He's so committed to you but He wants to show you the fire in His eyes! He wants to show you He's jealous for your heart to be fully given to Him.

-He said I just feel like the Lord in His love and mercy is saying, "I have seen you. You have known. I still want you. I just want it all now. Just give into me and I'll talk care of you." I just feel like He's after it all. I hope this is encouraging. I just feel the Lord strong right now and I feel His heart strong for you. He's so for you. He just wants the other lovers to go and it's for your good He has been hedging you in to where you would say I have to go back to Him. It's been horrible. But it's really His mercy to bring you to that place of full devotion.

 

(...I hope this is all making sense. I just feel the Holy Spirit right now so I'm just stepping out.) Ryan.

THAT MADE MY NIGHT!
:)
Thanks Ryan... Your a special dude and I love you!
Even though I can only remember you as 16 forever and ALWAYS





-----
It amazes me how someone could share so much about me to me through GOD. Mmm beauty!
SO much BEAUTY!

::Giving way to that familiar ill::

All the days become a cast away, I seem to think I don't belong here...

Do you remember how you wore that dress?


It slit my sight beneath the eyelids

Do you remember what you said to me?

What course has given you the right to stray?

And in your living tomb I'm stuck not safe

The clocks are ticking fast with every breath



Since we've been wrong

I've been part awake

Since we've been wrong

you will never, ever know me

What took you so long?

I'm not sure all the way

But my heart, it asks just one more time

Are you still a mess?



One day a rain will come and wash away

The earth that held us was no island

I have become ingrown inside this skin

I'll find a way out through those eyelids



All the days become a cast away

I seem to think I don't belong here



Since we've been wrong

I've been part awake

Since we've been wrong

you will never, ever know me

What took you so long?

I'm not sure all the way

But my heart, it asks just one more time

Are you still a mess?



I don't belong here

I shouldn't stay

What falls inside me grows empty

The walls between us will never break

Just seal it shut

It grows empty



Since we've been wrong

I've been part awake

Since we've been wrong

You will never, ever know me

What took you so long?

I'm not sure all the way

But my heart it asks just one more time

Are you still a mess?

::Giving way to that familiar ill::

What is going on in my little head? No not surgery or brain crap. I am talking thoughts!!!

So I have been researching some things that I feel like aren't really talked about in Church or in group settings... Things that I have always wondered, worried and asked myself and close friends but have never really gotten a "good" answer.
So this is why I am going deep into a search to find out these answers to all my questions I have been hanging onto.

And here is one... that turns into a few. WHAT WILL PEOPLE BE LIKE IN HEAVEN? AND HOW WILL WE KNOW EACHOTER? HOW WILL I KNOW WHO MY HUSBAND IS? MY MOM? MY SISTER?
And here is what I got... And it honestly scares the crap right out of me...

Jesus was asked a complicated question about heaven by the Sadducees (a religious sect that did not believe in the resurrection of the dead) that directly leads us to this conclusion. The Sadducees gave a scenario of a woman who married 7 men (sequentially, since they all died prematurely) in her lifetime. They asked whose wife she would be in heaven. Jesus answered:


"You are mistaken, not understanding the Scriptures, or the power of God. "For in the resurrection they neither marry, nor are given in marriage, but are like angels in heaven. (Matthew 22:29-30)

In other words, there will be no marriage or sexual differences among those in heaven, since reproduction is unnecessary. This concept is supported by other biblical verses that indicate that males and females are spiritually equal. The same concept applies to the races. I doubt that there will be racial differences in heaven.

The idea that we will no longer be married is disturbing to some people. From an earthly perspective, the dissolution of marriage in heaven doesn't sound like a good thing. However, in heaven, we will be "married" to Jesus, who will be our spiritual "husband." If you are not currently a follower of Jesus Christ, you cannot understand what this will be like, and it will probably not have any appeal for you. However, if you have experienced the "highs" of following Jesus as He leads you, you will have a glimpse of how awesome this experience will be. God would not take away something good if He did not replace it with something better.

Besides receiving a new body, those who enter heaven will be given a new name and will be incapable of committing sin. Therefore, all the problems we have by being mean to each other will be gone. We will be able to enjoy each other's company without the fear of being hurt by anyone. It will be great to be physically and morally perfect and to have fellowship with others who have been likewise transformed.


THOGHTS?!?!




::Giving way to that familiar ill::

It's been almost four months since my last POST...

And I don't really feel like talking... STILL... :(




::Giving way to that familiar ill::

Our actions are what set things in motion!

This mornings devotional reallllly really hit the spot!

One of the things that it said that I really enjoyed was... When you get so used to living with your problems and hang-ups you will start to lose your desire to overcome them, the enemy has you right where he wants you.
 
After everything that I have been through this past year and not to mention all that is new this week that's going on with my doggie. The other day after we got home from the emergency vet it was 2 am or later I don't even remember exactly but I got out of the car and said... "I am ready... Shoot me, rob me... What's next"?

My main reason for sharing this is that I feel I am ready for more punches to get thrown at me and I am not asking-begging God to help me and to help these things that are being thrown at me to STOP... I am just taking these "punches' and thinking well God has a plan with it, God has a BIGGER PLAN with it... But after reading todays devotion I thought holyyyy crap... I realllly need to step back and ask GOD to help me and take me by the hand. I really need to PRAY for all of this to not only have a purpose but to STOP. I just keep getting deeper and deeper in a mess that I feel like I have given up to Him but at the same time I feel that I am letting the evil take me over and win.
I need to fight.
AND I WILL FIGHT.

On to the other stuff... Let's just say thank GOD for sending me people in my life that have helped me so much physically, financially and much much more etc. love,joy all that.
Yesterday I had a client that I know was sent to me on that very day to show me that I am loved and cared about. She was so sweet and I am so thankful for her blessing... And not to mention I am thankful for each and everyone of you for the love and joy and blessings and prayer and hope that you have shined on me! :)
Right now times are super duper rough but hey... Thank GOD for plastic and I mean credit cards... Without it I don't know what we would be doing about Bella and all the thousands she has cost us within the past few days...

Right now I need to remember the truth and stay close to the light.
As for how I am feeling these day... I am alright. Not great. Not horrible just alright...
But I am content being alright...


I have an amazing journey ahead of me and I am so ready to take it on. More surgeries who cares... I am ready for the HUGE prize at the end... It could never come until the end until I am dead and gone BUT I WILL TOTALLY TAKE THAT...


Cool thought for today...
Our actions are what set things in motion... :)




::Giving way to that familiar ill::

Finally... More news just for you! :)

I have seriously came to this journal multiple times to write and then end up erasing it and closing the tab out. I don't know if I am afraid/scared or speechless about this life I have been dealt.
/:


Here are a few things that I thought I should share with you all reading this...
1) I am only sitting here typing at this very moment because of one reason, I have JESUS. I have told myself so many times that I was ready to give up on life. But having the love of my JESUS shine threw each one of my friends and family I have finally come to the point in my life that I feel I can give it all up and trust in HIM with whatever he has planned for my life.
(Those words can just be read over and taken so lightly but honestly the pain and the hurt that I have dealt with has been so tremendous that I smile when I think of how strong I have stayed threw all of this, I am a fighter I tell myself daily and I have been given this journey for a reason... That also makes me smile!!!)
2) Things that don't make me smile are things that I had such a love and passion for in this life that have been taken away from me with the depression, the neurological disorder, the ehlers danlos disease, and talk about more surgeries and more surgeries... I could type all the things I AM NOT ALOUD TO DO ANYMORE out but it's just stuff right... And I know that I can learn to love others things just the same if I put my heart and mind into it!!!
3) I feel I have been such a burden to all of my friends and all of my family... I feel and God has given me so many words to use to tell you all. And the newest and easiest one being "I don't want to talk about it." I mean I do... BUT I don't... You have to think I have a lot of anger towards this "part" of my life and why would I constantly want to have it brought up? I know each and everyone of you cares. I know. But its such a downer when your friends don't ask you things that make you smile anymore just things that make you sad and cry... I don't want my relationships with ALL OF YOU to become "HOW ARE YOU HEALTH WISE." With that being said JUST follow my blog and I will try and keep you all updated! :) Or if I start to talk about it... Just listen!

Hmmmm I know there was so much on my mind when I went to write this and now I can't remember...

Ohh. One being that I stopped cold turkey taking the Diamox (that crap sucks) it was making me worse of then I already was... I was suppose to be taking my CSF (spinal fluid) and acting as a shunt and pulling it to my kidney's... Well I honestly think it was trying to pull my brain to my kidney's. So we tried half a pill... Nope still the same... Then we tried a quarter of a pill and yep nope still the same... So I said screw it. I like myself having to much fluid in my head then. I can handle swooshing sounds when I bend over slightly, I can handle feeling dizzy and faint like... Yeah I can deal as long as I can sit up. This stuff had me on my death bed... THE COUCH. NOOO THANK YOU! I emailed my Dr. in nyc and he told me that if I want to stop the Diamox that is fine but he's there and ready whenever I am ready for surgery... Dang Mr. I was hoping you would give me straight up heroin to ease the pain... (j/k)

Onto another thing... I am suppose to be doing physical therapy three times a week and massage therapy three times a week... Ummm so when am I suppose to work? And how the heck and I suppose to afford 40$ co-pays everytime I go see the P.T. or massage gal? That's 240$ a week. WHAT? That's my rent a month. I think I need to win the lottery. What do you think? So we won't be following those rules...
(I feel like I am ranting... hmmm)
Last rant!!! I just got a letter from an attorney... I GOT SENT TO COLLECTIONS... WTF?

LASTLY... So so soooooo many more test this little girl has to have... :(
1) Bone density test- why? Before I can do the invasive cranial traction aka this... http://media.tripod.lycos.com/2186839/314x476_157_238_0.487_1_645_978-852248.jpg
I need to make sure my bones/skull is tough enough to handle the screws. Yikersss.
2) Ultrasound of the abdominal aorta. Sounds cool right... Until you read why... Having EDS causes you to have thin valves... Which means aneurysms. So we need to check that off that an aneurysm is not happening anytime soon.
3) Echocardiogram to check for Mitral valve prolaspe... Another test to check the valves...
4)Another MRI of my Lumbar Spine in prone position- why? That means me on my belly in the tube instead of on my back. This way they can see my spine much better to see how bad this tethered cord business could be... (a whole new subject)



Well I hope I left you with lots of fun stuff!
XOXO!




::Giving way to that familiar ill::

After a crap load of test after test... After test here is my answers from my trip to NYC to The Chiari Institute.

I won't bore you so let's make this longggg story short. (one reason I decided to email you all is bc I don't know if I am going to be up for telling each individual what's going on over and over. I got to do that with my family the day we got answers and wanted to scream by the second person).

It was confirmed that I do officially have eds. That stands for ehlers danlos syndrome. It's a connective tussue disorder. It effects every single peice and part of my body from head to toe.  Tissue is everywhere connecting everything. Tissue sits inbetween all your joints and all of your vertebre in your spine and the list goes on.  It has a lot to do with tone and holding things together like glue (they call it the fatty like substance that holds us together like glue). So to get to the main problem for me is holding up my head aka cervical cranial instability. These two things are what are bothering me the most my Spine and head stability. So let me explain more on eds. The tissue is a fatty like substance that plays as cushion and connection.  I am not producing that fatty like substance. So basically I am just muscle and bone to narrow it all down. Not 100percent but a lot.  The doctor explained that me being tall, thin, strechy skin, young skin and extreamly flexible is all external signs (they did some crazy test and there were also other signs) as the dr said all of these things are nice to have. Dot yay just yet.  Ha. He said I haves supermodel body. Pshhh ha whatever. But my insides are in trouble. My joints are 10-15 years older than other 25 year olds. So basically I am 18 on the outside and 40 on the inside. (hey that's actually what the wii told me awhile back. haha). So to the point... Having eds is causing my head to be unstable bc there is not tissue (etc etc) to help it be bouncy and movable. This makes me think of brakes and how when you don't have the shoes or is that boots haha you grind. That basically is the best way I can explain abd describe it.  It's causing my head to not be able to hold it's self up for long periods of time and it's putting tonnnns and tonnnnnns of pressure and pain on my spine. Like a pushing down affect. Think grinding brakes again how one things effects and leads to another. That pressure has already caused disk in my lower spine to start slipping /: this also putting a lot of pressure on my brain stem. Your brain stem is in change of breathing swollowing standing and a few more things. This leads to eventually make all of those things harder and harder for me to do. And scary thing is maybe to never be able to do one my own. But... You can stop the process and actually make these/those things better!!! Yay! Which is why they would want to eventually fuse me. The fusion would be later on it could be three months it could be a few years. It all depends on how fast all of these things start affecting me and how I start to feel after loosing the function of doing these things. :((( A fusion means no more moving my head. They literally fuse it in your skull and down to c4 with medal rods.  There are two rods with 6 screws in my skull and 4screws in my vertebras. This would be forever. And my skull would eventually grow onto them. (as for you all saying I have a few screws loose in my head will be the joke of my life) fusion helps the head to sit  up high and takes all of the pressure away and the pushing down away that's  on my brain stem and spine. This pushing that is accuring now is also causing my fluid. Csf. Aka water in the brain to be getting stuck. Stuck in my lower spine and stuck in my brain.  I am cutting it off when I am bending down even slightly bending down. See all of this csf/water is suppose to travel from brain allllll the way down to you tail bone in your spinal cord and alllll the way back up. It getting stuck is causing swelling. Swelling of the cerebellum (this is what I had surgery on this past July- yes the surgery releaved a lot but is still tooo dang big) The swelling is causing horrible horrible head pain black curtin flashes eye problems and the list goes on. It doesn't just end with  only swelling but it can eventually or could have caused cist to form in my spinal cord. Since the fluid  would just be sitting and sitting and building up.  Butttttt for now I am on a new medication that acts as a shunt. This means lotssss of pee for Felicia. It's going to take my csf- water away from my brain and spine and plug it to my kidneys. Which means pee time. These pills have a lot of side affects. So please pray I bypass all of them. I am also going to be wearing a corset. This is to keep my spine straight. Eds is causing me to hunch. Hunching equals cutting off the csf. I am also going to start to wear a neck brace in the car and around the house. Only as a passanger. See every bump I go over is crutial. And ouchie bc it's the brake affect again. So yeah I get to make a super cute fashion statment ha. Oh my. So with the new drugs for the flow to leave my body I am on a few things to hopfully prevent these side affects. And am on a big muscle relaxant for the night to stop me from tensing which is yet another thing eds people do tense bc they don't have the glue to help when you may bounce in a car or running or ridding a bike. This also leads for me to be weak and for my bones to brake or sprain easily. :( so no fun activities. I am not suppose to do yoga pilates or stretch. It could also cause breaks. :( guhhh what can I do. Well I can get massages. Actually they say I need to and to do phsical therapy three times a week.  I quess that's all I get to do. /: physical therepy is suppose to build up my neck which is what I need before they would even fuse me. Cutting threw that muscle again could be baddddd news if I had no muscle built up. Also I need bone density test and my lord this is story is getting long but the list goessss on and onnnnn on with all the information I hold and was told. But hopefully this can help you understand what's going on. :)))
To make this story all better I must say I got my answers and I am ready to try these things to prolng the surgery and to releave some pain while I build up my tone and while I work on my bones getting tons of calcium and more vit d. All these are mandatory before they can fuse me. Why bc my bone could turn into mush like cheese if it's unhealthy the doctor said.

::Giving way to that familiar ill::

A WEEK AWAY!

Yeah it's been some time...
I have just been overloaded with sooo much going on in my life. LIKE moving!!! Ah. It seriously consumes you! :( But at least it's kept my mind busy so that New York would come FAST!!!

I wonder if there will ever come a day when I wake up and want to run and hop and skip and not hurt. I have been trying to remain positive thru all this doctorness since the surgery and not a big downer on my friends but waking up feeling like you carried a 300pound man thru the night and you vision is blurry and your head is pounding... Well it's getting old. New York next Monday!!! I pray so hard everyday for answers from these amazing talented doctors. :)

So we leave monday... 4am for our journey to New York. YES we are driving everyone! Brad, my momma and I.
14 hours isn't so bad... RIGHT?

I guess I truly just haven't really found the time to write on my blog because I am just trying to pretend that all is ok and normal and I am fine... And just trying to hold out for New York...
But now that its a week away... I can finally be happy and digest it all!!!

Please say a few prayers for me. Some answers... Some good ones at that!!!
XO.



::Giving way to that familiar ill::

Until "NEXT" time...

Let's recap this past week and this week...

This past Thursday thru Sunday I got to spend with my best friend... MY SISSIE!!!
It was much needed and ended way to fast... Like most get aways.
She is such a good friend. I love my big sis...
We did nothing but hang out in our pajamas and go to walmart and watch movies (you all know how much I LOVE THEEE WALMART ha). And we got manicures and pedicure and NOW I have cute purple toes and fingers! Thanks to my sister!!!


I came back from her house with some sort of stupid sinus nasty-ness.
Andddd two cute new Alice and Wonderland mugs! Yaya. I most certainly like the mugs much better than sinus pooh!

And then

Last night was good!!!
IT was much needed...
Brad had his first "show" as a singer... It was cute watching him up there... He did great, sounded great... (Well at least that is what I thought)
I haven't been to a "show"(concert-music) IN FOREVER it seems.
I was a bit on edge with the whole what if some dumb ass comes from behind and decides to push me and everyone else and accidentally hit the back of my head..?


It was great to just stand and watch and listen... I used to be at shows three days a week... Fridays, Saturdays and Sundays... I loved music. I still do it just seems that I haven't had a real chance to actually go.

Next week Brad and I are going to see JONSI! It's the lead singer from Sigur ros(s) side band! I am soo excited about this! This was my birthday present back in December from Bradley... It seems like that was ages ago but well worth the wait!
I am very excited. Ugghhh he is so talented and amazing to watch. Those dang Icelandic people and their goodness!


As of lately not a whole lot has changed in life... Just waiting.
Waiting on the doctors to review all of my medical records at The Chiari Institute in New York and from there (after they are done reviewing) I will get to make my appointment and BE HAPPY!!!
I am sooo so sooo soo very excited beyond words to meet with these doctors... They are like... Well... The ying to the yang in CHIARI world. (That means they know their shit!)

I had a doctors appointment last night I was taught how to give myself shots... This was interesting and to say the least I will not be giving myself these shots on my own... Mr. Bradley will. I almost passed out when she told me to grab the fat on my booty and to stick in the needle. I almost passed out just holding this 2inch long needle. YIKES... THEN when she told me to stick it in I almost cried I was sweating with fear... That's when I told her I should watch at least this time so I know how fast to go... Yeah and NO WAY am I doing that. I almost passed out when she jabbed the dang thing in there...Was it painful heck no. It was the fear of watching. YUCK.

So yet another thing in life I have accomplished that I never thought was coming.
That seems to be happening a lot these days...
I am pretty sick of this medical crap. And this medical world. I want to be a kid again and forget about all this... But I don't see that happening anytime soon. So Felicia you just gotta suck it up...



There is way to much flowing through this heart and mind of mine.


I keep thinking maybe change will "change" this empty shit feel. Some examples. Vacation, a new pair of shoes, a new town, a new friend or something of that sort will make me happy all over again. But I have come to the realization that those are all temporary fixes. Man I just have to suck it up and take all these punches I am being dealt. I like to think of myself as a tough chick. But honestly inside I am a broken mess. Spiritually, mentally and health wise.


Until NEXT TIME...

 





::Giving way to that familiar ill::

And what the heck is Elhers Danlos Syndrome!?

Alright GOD... Can you hear me up there!?

"Can't you give a girl a chance to BREATHE!"

I need you now more then ever. I know I need to just stay calm and carry on but my goodness this is all tooooo much.

I would like to think that any "other" person would have already flipped their shit. I would also like to think I am somewhat staying calm...

Soooo long story short I had my doctors appointment with the rheumatologist yesterday. (Yeah the fun one that made me cry two times the last appointment because she was so mean) (This time she was super sweet and nice, must have caught her on a better day :/ )

Yesterday I had a lot of things thrown at me... Super "low" potassium, Vitamin D deficiency, Fibromyalgia.... And then... Ehlers-Danlos Syndrome... WHAT!?

What Is Ehlers-Danlos Syndrome? :

Ehlers-Danlos Syndrome is a group of inherited connective tissue disorders, caused by faulty collagen (a protein in connective tissue).

Connective tissue helps support the skin, muscles, ligaments and organs of the body. People who have the defect in their connective tissue associated with Ehlers-Danlos Syndrome may have symptoms which include joint hypermobility, skin which is easily stretched and bruised, and fragile tissues. There are six major classifications of Ehlers Danlos Syndrome.

What Are The Six Types of Ehlers- Danlos Syndrome?:

Ehlers-Danlos Syndrome has been classified into six types:

Hypermobility

Classical

Vascular

Kyphoscoliosis

Arthrochalasia

Dermatosparaxis

I have..." Hypermobility Type" of Ehlers-Danlos:

The primary symptom associated with the Hypermobility Type of Ehlers-Danlos Syndrome is generalized joint hypermobility which affects large and small joints. Joint subluxations and dislocations are a commonly recurring problem. Skin involvement (stretchiness, fragility, and bruising) is present but to varying degrees of severity, according to the Ehlers-Danlos Foundation. Musculoskeletal pain is present and can be debilitating.

Next step was getting more blood drawn... Checking some other things... And Brad helping me give myself shots (vitamin B12) Yikes! Yikes!

Now I ask myself... "How do you feel about all this?" I say... "I don't know, I am pretty numb with life right now." 

A friend sent me this verse. I like it in sooo many ways!

Proverbs 3:5-6,8!!!

Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.
Be not wise in your own eyes;
fear the Lord, and turn away from evil.
It will be healing to your flesh
and refreshment to your bone

::Giving way to that familiar ill::

The OTHER'S

I got a hold of a gal from a friend... Thru a friend... Thru a friend.
Thank GOD for FRIENDS RIGHT!?

I wrote her asking about the surgery that may be in my near future...
The craniocervical fusion...
And here is what she said...
(Just to help you understand what all is-will be going on with me)
(But keep in mind I refuse to have this surgery unless I am promised SOME relief and have it done at the Chiari Institute in New York)

Here is what she said... (p.s. I added" ((" for my own notes to help you understand how this may relate to me)

Hi Felicia,
I am happy to share my experience. I hope it can help. I had craniocervical fusion in August 2008 (3 years after decompression)((This is the surgery that I had this past July)).
I really struggled mentally with the decision of fusion surgery ((I feel the same!)). It felt so permanent. I worried about them putting my head in the wrong position. I took 9 months to think about it from the time they recommended fusion to when I finally scheduled my surgery.

When surgery time came, I felt very good about it and was totally ready. My surgery was tentatively scheduled for a Friday--we did invasive cervical traction ((scariest looking procedure-torture unit I have ever seen, this is the posted picture above)) on Monday to confirm that it would help my symptoms and so they could get images of the right position. They put me under anesthesia, screwed my head in the traction machine, then woke me up to see how I felt. It was amazing! ((Yikes, it sure doesn't look amazing)) Instant relief of the pressure-pain in my throat/neck. I could speak and breath easier. I was singing in there because it felt so good to push air out. I could move my shoulders better. They gave me water to see how swallowing was--so much easier. My vision was perfectly clear (I hadn't realized how bad it had gotten until I saw how good it should be)((Oh GOD this sounds amazing)). They brought my mom into the OR so they could gauge her reaction. She walked in and immediately starting tearing up, "It's Ave! I can see her eyes". (Like she could see the life and sparkle in my eyes that had been shrouded in pain for so long)((I know that I am ready for that feeling)). After that traction procedure, all my fears were gone. I couldn't wait to feel that good again.
Surgery was long: 7-8 hours, painful but much easier for me than decompression. My recovery was much easier than decompression too. But I was in really bad shape going into decompression. ((Nothing could be worse then that damn drain that had me in ICU for 8 days))

All those symptoms I got relief from in traction have stayed good after fusion surgery. The pain is significantly better. The pressure on my brainstem is gone so my entire body works better. Speaking and breathing continue to be easy. Vision is perfect.
Chewing and swallowing can still be challenging sometimes. The muscles in my neck, throat and jaw get pretty tired by the end of the day (but nothing compared to pre-fusion).

The only other symptom remaining is the muscle pain in the back of my neck, shoulder area, and upper back. I’m hoping this will improve as I gain strength (I am recovering from tethered cord surgery 2 months ago). I guess it could also be pain from having surgery in the back of my head twice. It would be a bummer if I’m stuck with it forever, but fusion and my other surgeries have totally improved my quality of life.

Before fusion surgery, I worried that it would be so stiff and rigid. I thought it would feel like wearing an Aspen hard collar all the time. It’s not bad at all. I’m fused down to C4. But I’ll be going through my day and pretty much forget that I can’t turn my head. I was already only turning with my stomach because it hurt too much to turn my head. It feels like no big deal. Some people will hang out with me for hours and not have a clue until I tell them.

The only other annoying things (not a big deal but I feel like I should tell you everything): I can feel my rods when I touch the back of my head. If I lay my head on a pillow and it’s right on the rod, I have to move positions. It causes pain. Minor inconvenience. The other is that I live in a pretty cold climate. When those rods get cold, it is a very weird sensation. Cold radiating from metal inside your body. Eeeww, but oh well. ((WOWZRS!))

I am so glad I went through craniocervical fusion. By the end of my thinking time, it didn’t feel like an option or a difficult decision. My body was getting worse and I couldn’t live anymore in that state knowing there was treatment I could try ((THIS IS SOOO ME!)). Now my neck definitely feels safe, secure, and supported. I love my rods, they have saved me.
Sorry this got kind of long. Please feel free to ask anything. I will try to respond as soon as I can.

I guess my main advice is to trust your gut. You know your body better than anyone.
Take care,
Ave


TRUST IN MY GUT!!! Thats all I can do...
Last night I prayed myself to sleep asking God to please reveal himself to me. To let me know what the best choice is for me. I am so weak inside and hide it all so well but I am ready to break down...

I have such an amazing support group I truly couldn't ask for more from them but I AM WEARING SOOO THIN...



::Giving way to that familiar ill::

Let's fuse your skull to your spine... No biggie...

Ahhhhhhhhhhhhhhhhhh!

So here is my latest news of my medical journey :(

This past thursday I met with my Neurosurgeon and we talked about a lot of stuff... (Sorry this post is late but I was having a hard time dealing with all this new information...)

Below is one of the things that we talked about...

Craniocervical Fusion: Craniocervical fusion is performed for spinal instability. 

An unstable spine means that the integrity of the spinal column has been compromised. Movement of the vertebral bones and discs becomes abnormal. 

My skull is not supporting holding up my head all alone. It is most likely due to the amount of skull taken out during the lower cranial decompression surgery. This is causing a lot of pain in the lower part of my head and my body to ache more. It's causing a lot of pain and pressure on my spine from top to bottom. 

The fusion usually involves several adjacent vertebrae and may include fusing the upper cervical spine." From cranial (head-skull) to vertebrae C4 or C5 fused together as one. 

Dr. Chandler and Dr. Deutsch think Craniocervical Fusion may be an option for me due to my spinal instability.

Scariest part is  that I would not be able to turn my head at all. Some people have said that they have "some" movement since the surgery, but it is very limited. 

(Depressing...)

But... Good news FOR NOW is Dr. Chandler thinks our best bet to deal with this for now is to play around with medicine...

AND I say Thank GOD! I think this sounds like a great IDEA... 

Pray for answers is all I can do daily... And dwell. Which is so sooo not good but my mind is so lost...

I found out a few people have gone to New York to a special Chiari Institute and they have GOTTEN SO MANY ANSWERS...

Now I just have to pray for my way there!

http://www.chiariinstitute.com/

Dr. Chandler also decided to up my medication. Neurontin. From 600mg to 1200mg... Yikes. Today has been my fist day... I went from 600mg to 900mg... Tomorrow I will start the 1200...

Neurontin is an anti-epileptic medication, also called an anticonvulsant. It affects chemicals and nerves in the body that are involved in the cause of seizures and serious chronic types of pain. 

::Giving way to that familiar ill::

HOPE.

Today has been truly unbearable (pain wise and faith wise). As I sit
here waiting to be seen by my neurosurgeon I ask myself over and over
"are any guestions going to be answered"? They sure do never seem to
be. They just seem to go into that list of symptoms on my nurses
computer and lead to test after test... WELL actually I guess I would
say these past few months have been pretty unbearable. But It seems to
be getting worse and WORSE... My symptoms have been so persistent. My
functioning has been non-existent (this could be the medication that I
take that HELP'S deal with the pressure in my head causing horrific
head pain, THE HORRIBLE ACHES and PAINS I deal with all over my
body)(But the medication is well worth NOT screaming in pain). The
misery is so surreal and blah. It reached that point again...The point
where I just can't take it anymore. THE rage and despair just take
over me. I was a person possessed. I know this has put such a strain
on my family and POOR HUSBAND. I want and WISH this all could just
stop. To go away! I just feel so terrible for my family. My loved ones
are the only reason I haven't left this world much sooner (and yes I
mean that and only my loved ones truly know that). BUT I have to
believe that there is nothing within me that would stop me from giving
up, completely and utterly (thats where faith steps in). With out fait
how else could I go through all these years of intense distress...Plus
years of pain? I have no choice but to HOLD ON! I have no idea what I
would do without my support. They are the only reason I feel like I
can hold on (like I said before).

It's just that sometimes, it feels like a game of tug of war. My body
is constantly telling me that something is horribly wrong. But there
is nothing to do about it. Absolutely nothing. And it's so frustrating
for those around me to not be able to do anything to help. But the tug
of war is in me. I just want to give up and let go of that DUMB ROPE!
I want to so bad. I just don't know how I am going to face another day
(which I've said 1,000 times to myself before). But I can't give in,
because I could never hurt my family that way, after all they've done
for me.

But when will it be enough? When will I finally have gone through
enough? How bad does it have to get before they'd let me leave? LORD I
NEED YOU!

But...I know the answer to this question. I don't get to leave. It
will never be an option, no matter how unbearable my illness becomes.

I guess, on days like today, when I am so completely out of control, I
wish I could just call 911, have an ambulance come over and
tranquilize me. That is what I need just a week of a coma. The
medicine isn't doing it's job anymore or at least right now. My cries
out to God are me asking him why he has left me here so cold and all
alone. So sad and helpless. So scared and not loved. But I have to ask
myself WHAT HAVE I DONT TO SHOW HIM LATELY THAT I LOVE HIM AND THAT I
CARE FOR HIS WORD. I must beleive that I have stength to GO ON. I have
for all this time... But it is wearing so THIN...



::Giving way to that familiar ill::

Sometimes the bad times have a few good memories!

These are some old pictures from this past summer (June)... In the Wisconsin Dells! 

I think we were there for a total of 4 days... 

I remember not enjoying any of them... Just pretending to. 

I was in a lot of pain from Chiari. 

Looking back at these pictures now these are the few that made me happy!

The others where honestly pictures that Brad took of me sleeping... 

He is such a strong man to STICK by my side thru all of MY shit. 

::Giving way to that familiar ill::

It's the little things that we do that mean anything...

This past week in a half has been such, such... suchhhh an emotional time in my life.
WAIT... This past two years has been such an emotional time in my life...

I have been holding it all in and holding it all back for so long... I feel like I can't seem to let out these same few tears that have been sitting in my eyes for the past month.

When is it okay to just flip the switch and let the flood gates DOWN!?

Dang it. I wish I never heard the question of "how are you feeling Felicia" EVER AGAIN. 

How am I really feeling. Or what would I LOVE to scream in your face?!

I FEEL HOPELESS. I DON'T FEEL STONG ANYMORE. I FEEL LIKE THIS IS NEVER ENDING! I FEEL SO WEAK! I FEEL LIKE I AM ON MY LAST STRING just waiting to fall... (this doesn't mean anything harsh to anyone, please don't take that personally. It just that truth that hides within that you wish you could really just let out...) 

LATELY, I feel secure in death, (wait can that even be possible? Secure in death)
Have I lived out all the dreams and hopes and days and adventures and laughing and kids and my love in my marriage that I had always wished for as a kid to now in life?
NO... NO! I haven't.
But I do know that I am wearing thin. And my mind and heart are at ease with the thought that shit HEAVEN sounds great right now! No more pain, no more tears, no more depression, and all JOY! But I know that I have a purpose here on this earth that has become my "hell" (in my own way)...
I know that God really does love me and that he really does want to USE me... I am not quite sure yet but maybe I should ASK... RIGHT?
Ask and it will be given to you seek and you shall find.

"Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. Matthew 7:7 ( this has always been one of my favorite bible verses since I can remember, In sunday school we sang a song to this verse!)



So what's new???
I had an MRI of my brain a week ago yesterday and go in on April 1st to talk about result, the new drug I am on and more testing that Dr. Chandler and I had talked about this past visit with him. (JOY). But this next Wednesday I finally get to go see the Rheumatologist about my muscular system. FINALLY! For now we (meaning the doctors, Brad and I) are in the works of looking for what the heck is wrong with my body...

So stay tuned...

On the other hand I went to starbucks this am 6am that is. To get my all time favorite drink... Warm apple chai infusion. SO YUM! And while I was there and waiting for my drink I was looking around and came across this book called "my life. my love. my list".
It is full of some poetry and then goes along to questions that maybe you would never think to ask yourself or it just seems easier to answer when a book is asking you... So I bought it (being cheep and on sale I was sold) and when I got to the Smiths to watch Garrison (him still being asleep) I decided to crack open the first page and to fill it out.  I want to do one page at a time/day... Todays topic/question was...

Which people from your past would you most like the thank...
I wrote down three.
My Peeps, My momma and My sissee!
And I also write down reasons why...
It made me feel good.
It also made me feel like maybe one day one of them will read it. Maybe I will be gone. Maybe I will be standing there. But I hope it makes them smile to know that I am truly thankful for them and I love them so much!







::Giving way to that familiar ill::

What's UP with me, FE.

A rainy day could always keep a writer writing...

I have a few things that I would like to share with you that I am happy to say blessed with!!!


1) Being that my dentist loves me and has not charged me just my insurance for the last year almost!!! This means all the crowns and root canals have been completely paid for and not to mention my NEW FUN invisalign!!! (YES, 100 percent paid for) Thank you JESUS!!!
2) I have two amazing jobs that I ABSOLUTELY LOVE and look forward to going to. Cutting hair three days a week and nannying a little man named Garrison two days a week (HE IS THE COOLEST 2 YEAR OLD I HAVE EVER EVER MET)!
3) We found a killer deal on a killer apartment! So happy to have EVERYTHING completely BRAND NEW!!! (washer and dryer, granite counter tops, stainless steel everything, a huge bathroom with a huge huge JACUZZI tub, huge bedroom with a sky light... Yes a skylight and wonderful wooden blinds) (OHHHH the things that make a girl happy) P.S. Out landlord is so kick ass awesome!
4) I am discovering what I LOVE and what I NEED to do to enjoy life... I saw a wooden sign that read LIFE IS TOO SHORT EAT COOKIES and that made my mind trail off into wonderland... Yes a 25 year old can still dream off into wonderland... But that sign touched me in a million ways... One being that I need to step up and do things I love and enjoy, that I need to find joyful things in my life, I need to stop hiding in the corner and do stuff (even small things go a longgg way) and many many more things and thoughts... Worrying will get you nowhere.

The only scary thing is is that I know that as soon as things get good they usually what... GET BAD... But I need to put my faith in life and shut up and let life go... Which is completely  hard for me to say let alone DO.

ON THE DOWN SIDE...
I had an MRI on Monday to do a contrast on my brain with its CSF flow, Dr. Chandler ordered this MRI to make sure that my crazy weird problems are not due to lack of CSF flow.
You are probably wondering what the heck that is... SO:
Magnetic resonance imaging (MRI) scan of the head is a noninvasive method to create detailed pictures of the brain and surrounding nerve tissues.
CSF flow study (MRI with contrast) measures the velocity of cerebral spinal fluid as it flows from the cerebral ventricles (fluid reservoirs) inside the brain, down to the skull base via the cerebral aqueduct, and to the spinal canal via the fourth ventricle and foramen magnum”. Cerebral spinal fluid is continually produced within the center of the brain, (about 500 cc/day) and is continually reabsorbed at a number of locations along the surface of the brain. There are a number of events, and disease states that can significantly alter the velocity and behavior of CSF over time, these shifts are visible via the CSF waveform obtained through the MRI study.  CSF is not a static fluid; it is continuously flowing back and forth between the head and the spine.
The technologist will place what is called a coil (mask like) on top of your head. This is what will create the images needed by the radiologists to provide you with an excellent examination. This will remain above you during the whole examination. For most of the head studies we will be using contrast (dye). The contrast used in MRI is very different than other parts of Radiology. The technologist will start an IV before the study begins. How your study needs to be performed will determine how the contrast will be administered. This is the only way to best look at certain pathology such as tumors and infections. This will make your examination complete. 

Lets just pray that all comes back NORMAL and well! Felicia doesn't need another surgery for a stent:
a stent is a man-made 'tube' inserted into a natural passage/conduit in the body to prevent, or counteract, a disease-induced, localized flow constriction. The term may also refer to a tube used to temporarily hold such a natural conduit open to allow access for surgery. This would be to help the CSF flow correctly and normal.

::Giving way to that familiar ill::

Medical JOURNEY...

Lately I have kept a lot that is going on (medically) with myself... To myself.

I am not quite sure why... I guess I don't want to burden anyone else with the bull-**** I am going thru.

As you all should know this past July I had a decompression surgery/ craniotomy for something called Arnold Chiari Malformation... But that isn't the only major news that I have... 

I am honestly annoyed with not having anything positive to post on my facebook. But hey it's the truth and it's real it's what's going on in my life there is no other status I could update my friends on and that is the kind of person that I love myself for being::: TRUE!

But then again...

Maybe it feels safer to keep it all inside.

Or maybe I am sick and tied of talking about ME (I think it has a lot to do with this one)

Well I guess there is no other way to put it but say my life is in shambles. (What is the definition for that word anyways... Shambles =A scene or condition of complete disorder or ruin

OR Great clutter or jumble; a total mess) 

OK I AGREE ON THAT! WELL AT LEAST THE TOTAL MESS PART.

I constantly ASK MYSELF why me or why do I have to suffer with all this crap.

I think I am still searching for the answer to that...

I just hope I find the answer soon... Or at least the me that feels content being "ME" 

I am learning so much about myself lately and WHY I have, do and will continue to feel "not normal". 

Because to put it into Perspective I am not normal. Or the typical per say "normal person". I am also not deathly sick... But I am sick.

So here is the DL. On what's going on.

I have been seeing a million doctors this past year of my life and even more now then before the surgery. The surgery left me with a lot of new pain a lot of weird symptoms and most importantly shoulder blade and scapula problem.

Physical therapy has helped a bit but I think the pain has just become "normal" to me. I just deal with it. I just have to. RIGHT?

Kind of like my headaches. They suck pretty stinkin' bad but I just deal with them. Heck yeah when I think about how I hurt I can burst into tears because I FREAKING have these dang headaches EVERY day of my LIFE!

It makes me sad most definitely and it makes me depressed and get down on myself and life A LOT. 

I need that happy median like I stated before. 

I just hope I find the answer soon... Or at least the me that feels content being "ME" 

Lately I had been thinking about second opinions so I have taken it upon myself to go out read and search for new doctors to get a jist of what they all think is going on...

So far.

I have been told by a orthopedic surgeon the only way to take away the pain in my shoulder area scapula, rhomboids and lower trapezius is to FUSE my shoulder blade to my first rib... But I would have no range of motion in that are.

HECK NO.

Then I went and saw a new neurosurgeon that I read about being one of the best in Chicago and he took a look at my old MRI's and new MRI's and told me that my chiari malformation was the WORST he had ever seen and he understands why I had the surgery and why they removed so much of my skull and whatnot but basically told me that the only way to solve the HEADACHE issues is to yet again... FUSE my neck to my spine. Which would lead me to no movement in my head.

HECK NO!

  

So deciding that I had better stick to the doctors whom I know and have NEVER told me they were going to make me a robot...

So I had two doctors appointment with my original neurosurgeon this past thursday and my original neurologist.

I feel like GOD was leading me to go back to the source. Back to the people that HAVE seen inside my head (literally) and I had trusted with my life before.

So I met with Chandler first (neurosurgeon) talked about A LOT I mean A LOT of stuff and problems and wondering what the heck is going on with me...

He decided after talking that something was going on with my nerves. Something was being OVER worked, sleep was an issue and not resting and he put me on a anti-seizure medication (very low dose for now but wants my body to get used to it and then go up and up from there)

He also requested that four weeks after taking this WILD PILL (oh yeah it makes me a bit trippy at night after I take it) that I get a sleep test done. Yay I just love staying at the hospital guhhhh...

After him I met with Dr. Shepard to go over a neuro-test. He seemed very confused and worried about my shoulder blades... BOTH now. He said they are winging pretty bad. Which means they dip out even when my arms are to my sides. He was also concerned about my left side and all of it's problems.

After talking about my family history of muscular disorders he left me with saying he thinks the medication Dr. C put me on will help a lot but it may take time and wants me to see a rheumatologist (they deal with neuromuscular disorders). 

After leaving there I was like why does NOBODY know what is going on with me?

What the hell is going on!?

So the next morning I woke up after taking this pill the night before and was in some crazy trance and led to a horrible 10 minute streaming out of my nose nosebleed.

It was so bad and scary I called Dr. Sheperd...

As we were talking I asked him a lot of new questions that came up after I left his office (typical).

One of the questions was why don't you test me or didn't you test me for fibromyalgia? (By the way the nose bleed supposably meant my apartment was dry... hmmmm...) 

He said OH I AM ALMOST 100% SURE YOU HAVE IT. But there is not bloodwork to show it. You just have to have all the symptoms.

Your mom has it. You have all the symptoms. You are tender in all the places fibro patients are and that is why I am sending you to a Dr. (rheumatologist) that deals specifically with those kind of problems...

I THOUGHT... WHAT THE HECK MAN.

He could have let me know this in his office.

So I guess is how this works is the RT will take tons of blood samples to rule out that I don't have anything else going on like 

• Amyotrophic lateral sclerosis
• Multiple sclerosis
• Muscular dystrophy
• Myasthenia gravis
• Spinal muscular atrophy

So lets hope not! 

So how am I feeling dealing with this?

For now I feel annoyed by this process.

I ask myself what NEXT... And I am left feeling a bit

Blank.

::Giving way to that familiar ill::