I got an email today saying hey, 28 new people have viewed my blog (SAY WHAT!?, that might be a scam, who knows) . My thought, HA, its been years since I updated it... But maybe someone is needed/liking what I have to say? Maybe I am helping someone else out...?
With that being said...

Its 3:18 in the afternoon. I am sitting here sipping on my morning coffee, YES, I said morning coffee. Today I didn't crawl out of bed until 1:30pm. My spine feel like a constant tug and then a pulling feel like someone is trying to yank it out of me. Its like this awkward harsh ache and pain that just wont leave me alone. Last night I laid on my couch so uncomfortable, my head couldn't find a spot nor could my spine to get comfy in, oh and I should mention my tail bone feels like a huge bruise. But back to the couch, I laid there and screamed out to God, WHY? What have I done to be in this horrible constant pain? I got no answer, I only got sadder and sadder. Those horrific thoughts of "ending it all" kept clouding my mind. The worst thoughts a human could think... I felt like I was at the bottom of the barrel as low as one could get and I honestly have felt this way a handful of times. I don't say this lightly, I don't share this often (I actually try to keep my pain to myself and put on a face and act like all is ok) I am being completely honest and SHARING all of me with you all. See yesterday I was trying to play it tough, I tried to only take 1 tramadol (opiate pain killer) and 2 fioricet (head pain and caffeine medicine). BAD IDEA. I am suppose to be taking 4 tramadol a day and no fioricets. Recently at my last doctor visit with the genetics doctor (first time meeting him) he switched around all of my medication and took me completely off the fioricet only to add tramadol and adderall to the mix. But I can't take the tramadol and the adderall together because IT MAKES ME SO SICK. Even just taking the tramadol has me nauseous non stop and puking at least once a day, mainly at night but lately its been mid day and night since I am at full dosage. I thought I would be a bad ass and try to ween down the tramadol and introduce the fioricet (again). I am no doctor but I DO KNOW MY BODY. This opiate is making me a sick mess... Long story short I think I need the tramadol (lame), even if it has me nauseous and puking, its way way better than this horrible spine pain... To give you a gist I can't even stand up, the spine pain is so debilitating... So back to the tramadol, I took one when I woke up at 1:30pm. I am now able to sit up and feel like the pain level of a 10 is now at a 6 which is good for me. Deep down I keep telling myself its only going to get worse, I am only 28, whats 38 going to feel like? How will I ever be a good mother? How will I ever even be a mother? Oh boy this has me in tears just thinking about it, but lets get real the whole time I have been writing this I have been sobbing like a baby...
Some friends/family have asked and some haven't about what my "new" diagnoses is/whats going on.
Like I said above I met with a genetics doctor, it was a little over a month ago and it was confirmed (although other doctors have told me this) that I have Ehlers Danlos Syndrome http://en.wikipedia.org/wiki/Ehlers–Danlos_syndrome
on top of the Arnold Chiari Malformation (which we knew I had, thats why I had the brain surgery 4 years ago)
http://en.wikipedia.org/wiki/Arnold–Chiari_malformation
He wanted to do some MRI's and other things to see what my anatomy is doing and where all this spinal pain is coming from. The MRI's came back with more than one problem, some taken more lightly and one taken with tons of tears and tons of fear. Heres the 411:
-Straightening of the cervical spine, its suppose to have a nice little arch to it, mine is straight.
-Disc disease in all my cervical spine, the MRI was only of my cervical, when I meet up with the neurosurgeon we will talk about getting my thoracic and lumbar spine (middle and lower spine) scanned.
-AND the worst for last, cervicomedullary compression, where my brain stem and spinal cord meet up I have kinking. The ladder has me needing to see a new surgeon, which you don't do just to meet, you do to talk surgery, which is scary... MORE BRAIN SURGERY?1? BARF. No, no, no...
I don't see him until January 23rd, that was his FIRST avaliable. I just pray it stays the same until then, I pray it fixes itself (hey, you can wish and hope and pray for things that never happen, I could be a miracle).
But the surgery that they are wanting to do would leave me paralyzed, only in my neck area but still, no neck movement at all. :( And not having the surgery could lead to my whole body being paralyzed... So I guess we shall see.
Heres a what the surgery would be like, hope this isn't to gross to look at. 

::Giving way to that familiar ill::

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::