Its Late, Its Quiet, Its Dark, Its The Way I Feel Inside

Its late at night and I cannot sleep. For the last week I have been having issues sleeping as everytime I fall asleep I am jolted awake by these horrible pains. They feel like being hit with a cattle prod. I fondly refer to them as the cattle prod in the crotch and they wake me instantaneously. Its amazing I can feel that pain but I cannot feel when my husband tries to touch me because I am numb. People ask well cant you at least let him be satisfied? What they do not understand is my husband is not that guy that just wants to satisfy himself, hes that guy that wants to make love, and knowing I cannot feel his touch it to painful for him to have that excitement that is required to satisfy himself, if he cannot satisfy me he cannot even bear the thought of just satisfying himself. He wants me to feel that intimate touch the same as he can and if I cannot then he cannot bear the pain of knowing this, so he too suffers along with me. That is why I am awake right now. I was asleep, but as you can see I am now blogging. Sometimes this blog saves my life.

Its one of those nights where everything is very dark and quite, quite except for the sound of the wind and the thoughts in my head. You know the kind of night I am talking about? Those kind of nights that make your mind go to dark places because there is no one there to talk to so your mind just wanders, it wanders to dark and desperate places and seems to match the outside world, the same as your inside world?

The silence makes me think to much, and for some reason makes the physical pain and the emotional pain so much more intense. Its like because I have nothing or too much too think about, it makes the nerve signals easier for those nerve pains to come through and make my life hell. Its like a direct connection to remind the  signals of the damage, the damage that is me and who I am now.

I sit and think about what my life was like before the day my life changed. I have decided to refer to it as the day I had to start a new life, because my old life as I knew it was gone. And let me tell you this new life sucks to be honest, it sucks I cannot do what I used to and it takes so much for me to try and keep my spirits up. That new life started in the beginning of 2009. When its quiet and late I am reminded all to well of what I have lost. The loss of running and playing with my grand daughter, going roller skating, riding my bike, hiking the cliffs around my house, going on vacation and swimming with dolphins, all those awesome adventures that I did and had to look forward to in the future, that life that is no longer there, that future was taken away from me in a split second, or I guess you would say in how ever much time it took that doctor to destroy my nerves..

My husband lies beside me sleeping soundly as I type away. He sleeps like a baby, how I envy him sometimes. But then I feel bad because how can I envy a man I love so deeply, a man who loves me so deeply. A man who stands beside me no matter what, that goes to doctor appt. after doctor appt. That will get up in the middle of the night, put on his miner head light and cath me to help keep infection under control, That man that will awaken if I cry to loud from the pain and hold me and calm me because somehow even though he cannot feel my physical pain he somehow understands it and he just keeps on until the crying and hysterics stop. How  can I envy a man who has taken over not only his own responsibilities in life but mine as well. He Cleans, he does all my laundry, he does the grocery shopping, hes everything all the time. So how can I envy him for taking on all of that. Its the sleep, maybe that is what it is, it is the envy of the sleep and not him. Its the envy I have of not being able to sleep a whole night through without being jolted awake by pain. Its really amazing the small things that some take for granted. I now appreciate those small things. I wish for those small beautiful things all the time.

I have written a lot of poems at night and slowly I have been transfering them over to this blog, and for some reason tonight seems a perfect time to transfer one of those poems that can explain how I feel better than  I can write it in regular words. So for you my friends who follow my blog I will post one that I wrote at an earlier time, a time when I was feeling this same way. I really hope those that consider that a tarlov cyst can cause you grief really understand how much worse it can be, if you have a surgeon that can damage you, and lie to you and put you in my place. I would love to go backwards in time if only I could.

Here is one of my poems of my sadness I live with now that my life was changed:

The Silence Within

The silence is so deafening
As I keep going further in
I cannot seem to turn and go back
To where I have always been

I Just keep going deeper
Though I try turning back
The sadness is so beautiful
To this heart that has turned black

I'm trying to chase the rainbow
That I know is over the ridge
If I could just climb high enough
And go across that bridge

I need to make my way across
To the beauty that life has for me
The song of oceans I know exists
The beauty I used to see

How did I end up in this place
Where my dreams were taken away
Its not the place I used to know
Where my mind would run and play

Be careful of who you trust out there
So you don't end up like me
Trusting someone who only wants to
Go and steal your dreams

I have to say at least I have learned
To open myself to only a few
To keep my dreams close to my heart
And share them only with you

I hope the silence goes away
And I can come out to the sun
I want to laugh, I want to dream
I want this darkness done

The Silence within me is losing its grip
As I keep trying to get away
I think I may be winning the fight
The night has now turned to day

The silence seems to be gone for now
I hope it stays away
At least for a while, so that I
Can feel warmth shining for at least a day

Why Does The Sun Shine But Not On Me

Its Official, I hate hate hate CES.

It is one of those days that no matter how I sit, lay, stand, it makes no difference to my body and the pain that defies me. I am in Pain. Pain that rules my life. I have taken a burning hot bath, I have sat on ice packs, I have taken medications, I have sat in the recliner, I have laid in  my bed, laid on my couch, stood and paced and nothing can effect that horrible pain. Why? Why is it me that has to live this way? Why not the asshole who has created this? Not only am I dealing with the pain so badly today, but I am so tired I want to die. I feel like crap, have no appetite and I am tired of having hot sweats and then cold chills from this infection.

I also hate when people say " Hey how ya doing today" and you say" oh I am ok" when you know you are lying out of your ass. You know you are not ok, but its what people expect you to say some kind of pleasantry that was started a million years ago I would guess. Do they really want you to be honest? I have seen many people disappear when I am honest. Its like when you go to a doctor and they always always ask " So how are you today" . Now how ironic is that really? You are in the doctors office because you are obviously not ok, but still you say oh I am ok, and they obviously know that since you are there you are not ok. So Why the question, why is it asked? Its a frustrating question that I always dread.

My daughter has gotten so smart over  the last year and a half, she does not ask me how I am today. Why? Because she knows that I will not really tell her, and then If I do really tell her she gets upset. Its a no win situation, so instead we just dont go there. here is a poem I wrote earlier on in this CES journey that really fits this conversation of how people ask questions and don't understand. It is a poem of my frustration. Its a poem that unfortunately I have too many days feeling the same as I did when I wrote it. I wrote this back in July of last year:

'I Am Tired

I am so tired
I am so tired of being me
I am tired of wanting change
I am tired of what has become of me

I am tired of the pain
I am tired of my body defying me
I am tired of people being angry at me because I am tired

I am tired of being sorry
I am tired of trying to say I am ok when I am not
I am tired of the fact that I am just not me
I am tired of being lost in this body
I am just so tired today

I'm Angry

I am angry
I am so very angry at life
I am angry that my most personal self has been taken
I am Angry that a large part of me is gone
I am angry because I have to explain myself
I am angry at the pain each day
I am angry that I have to explain the pain each day
I am so angry sometimes it consumes me

I am angry I cannot feel
I am angry people don't understand I cannot feel
I am angry that I have pain and cannot feel
I am angry people don't understand what its like

I am thankful

I am thankful I have you and you love me
That is all I am thankful for right now

Hopefully tomorrow will be a better day

The CES that never Stops

So I finally got my results back from my culture that I had done on my urine sample from last Wed., and again I have the infection. Its back with a vengance again. Now I am on 10 days strong antibiotics, and 180 days of lower dosage, which will again probably be renewed to another 180 days. My urologist has told me that it just seems no matter how sterile I am with Cathing, its just a lose lose situation. There is no way to avoid infection. He says that its now looking like I most likely will be permanently on antibiotics, as each time I come off of them, the infection comes right back.

I did want to restate a few things that I think are really important for people that see Tarlov cysts on their MRI's.
If and when you see a neuro about it, #1 make sure he is board certifieid and honest.
#2 and I cannot stress this enough, Make sure to request and see ANY and ALL Paper copies of tests that are performed to determine if it is a problem. I trusted the doctor, and believed what he told me. It was not until much later, that I figured out I had been given inaccurate test results, and well we can all see where that has gotten me. Never trust what any doctor tells you, Look for yourself. I wish I would have as I would never be writing this blog.

Ok back to blogging now, but I really wanted to reiterate those points as they could literally change your life.

Today has been a really bad day for me. I have been having severe nerve pain and cannot move around much. I am still amazed how I can be so numb with no other feeling then those nerve jolts that make you scream and sound like you have tourettes syndrome. Those others with CES that read this blog know exactly what I am talking about.

I have also been having hot sweats and cold chills all day due to the infection, along with the Nausea. I wish it would go away and leave me alone. Ah if only wishes could come true, there are a few things I would wish for :) Since I am feeling so bad to day I thought I would work on a new poem, as writing anything that might slightly seem coherent would take more thought, while writing poetry opens and empties my mind. Empties it of all that bad stuff that gets stuck, and I do feel the need to empty my soul.


Why Did You Take My Soul From Me?

Where did you take me I ask myself
Could you have not at least left me my soul?

Did you have to take everything of who I was?
Do you ever have the urge to let me know?

At first I wondered if you had the chance
Would you have left me intact?

But then I learned you had a second chance
And again you chose to repeat this act.

How many times since you left me gone
Have you repeated this same exact thing

Taking the souls of from those loving hearts
Those souls that can no longer sing

If they are anything like you have left me
Their souls can only scream and cry

Scream from the pain and misery
Screaming and asking why

Why would you lie and destroy my heart
And still away the person I used to be

Is money really worth so much to you
Was it really worth more than me?

I hope one day you change your life
Or maybe it might happen to you

I actually think that is the only way
You will understand what you do

To put a price on a soul and life
Is the worst kind of person to be

Cutting emotions with your steely knife
No matter the damage you leave.

I hope one day you will see.

Sporadic Life Sporadic posting, its what CES is all about

Well I know its been a while since I have made a new post, but there have been a lot of stressful things going on. Some of these issues I cannot post about right now, but some I can. Right now I am only going to post about one thing out of so so many. Tomorrow I will post about another very important one, that I think those with Tarlov Cysts should really worry about, but today I am only going to post about this one thing. Take note that CES makes this one thing like a grain of sand on the beach, as there are many many things that make up CES.

One of the great things in my life right now is that I am going to have a new grand daughter, and so far things are going good on that front............... well mostly.

The part that does not fit into that category is the wonderful baby shower I had for my daughter. You see my First grand daughter was born almost 15 weeks early. So when that happened, as every mother I had planned to throw my Daughter the best baby shower any mother could dream of, the baby shower of my daughters dreams. But because of my grand babies early arrival, my daughter never had her dream baby shower. Instead she spent day in and day out at the hospital with her beautiful daughter who was fighting for her life every day, for 99 days to be exact. I had watched my daughter grow from my little girl into the strong woman she is today and I could not be more proud of who she has become.

So for this new grand baby that is on the way, I planned her baby shower and wanted to fulfill that lost dream. You see she is my only child, and as a parent I wanted to make her dreams come true, Its all I have ever wanted from the day she was born. I reserved this beautiful location, with beautiful gardens and ocean views. I made sure they had delicious food, and I special ordered a wonderful cake. I invited all of her close family and friends to join in her celebration. Every thing was perfect down to the balloons and party favors.

Sounds wonderful right? And it should have been. But you can never really predict when CES will rear its ugly head. It just so happens that particular day was to be one of those days. I woke in the morning, with a very high level of pain, so I took my pain meds to control it and continued to shower and dress and was so excited to fulfill her dream shower as I prepared to get ready and go. I was all set, I had showered, done my hair, put on my makeup, I was excited and ready.

Right before I was to leave my house all hell broke lose. I was sitting there one moment excited for the day and the dream I was going to fulfill. In the blink of an eye I and my house was covered in feces and the nerve pain went out of control. It continued on and I lost control. Not only did I lose control, but my body defied me as well as it lost control. Sometimes when this happens it will stop once it has happened. Then I proceed to clean up the mess and move on, not letting it ruin my life. However this day, for some reason it did not stop, nerve spasm after nerve spasm it continued on. I started to panic. What was I to do. It was about 10 minutes to the party and here I was in severe pain, covered in feces, as I am sure guests were beginning to arrive at the event.

Thankfully for my wonderful loving husband who I could not be more blessed to  be married too, he cleaned up the mess I had left all over from the living room to the bathroom, and took my place, where I should have and wanted to be. He left the house and went to meet the guests. I am not sure what he told them without embarrassing me or himself, for I was fully embarrassed and humiliated beyond comprehension. As he was there at the shower getting it started I was home in severe pain from nerves and spasms. See the big problem when this happens for me is that I have no feeling and no control, as every thing is numb in that area, so I cannot feel when everything evacuates my system. And believe me for some reason on this day, this day that was to  be so special was worse then most. I dont know how there was so much that could evacuate from one body, but so it was. I was stuck on the toilet for a good hour or more. It was excruciating and painful. It got so bad that it got to the point where blood was running out because apparently it became so inflamed from the spasms it caused me to bleed.

So there I was stuck on the toilet, in pain and evacuating blood and feces. I eventually was able to finally bend over far enough from the toilet to run a hot, very hot bath after about an hour. Once the bath was run I got in there and layed down in the water. I took many wash clothes and continiously soaked them with the hot water, covering all the areas that had pain. It took well over an hour with that process to finally get the pain to subside, along with more pain medications as well as muscle relaxers. Once I was finally able to get it under control, I again began to prepare myself to go to the shower and hide my frustration, anger and humiliation from all that attended. I was not able to dress in that cute outfit I had planned on wearing, as it was now in the washing machine, getting rid of all the waste it had been covered in. Instead I wore the most comfortable clothing that would not put any stress in my mid to lower section of my body, and that would accompany a diaper without being to obvious.

I eventually made it to the shower, and it was as beautiful as I had imagined it for my daughter, and I know she loved it and I had made her dream come true. That was most important to me as I love her more then this world and would do anything to make her happy, which includes going through an ordeal like that and greeting and talking to the guests as though every thing was fine. I have learned since this horrible ordeal started in January of 2009 to become a great actress. In the end even though I had to go through all the pain and all the frustration, to see my daughters smile and her tell me mom it was every thing I dreamed it to be was worth it, but then again I would also die for her.

The cost of this to me, and I dont mean money, was being mentally and physically exhausted for days. Because no matter what I went through that day to get there, There are certain things you have to fight through to stay strong. It does not mean that I can live a normal life or that I can live with the damage done to me, believe me I am not ok with it, it means I make myself appear to be normal in front of others as to not feel the humiliation I already have to live with inside myself.

Again this is just one day. I have to warn anyone that has a tarlov cyst, this could be you if you choose to have surgery, you can have days like this and you can have more days like this then you do not. I know, that is my life. I have to live my life one day at a time and the above experience is what could happen if you try to plan something wonderful in your life in advance. Your plan can be changed in seconds. At least when I had the tarlov cyst I knew what to expect, that I would get some siatic type pain in my left thigh, that my left big toe would be numb. However this CES? You cannot plan, you cannot hope, you cannot dream. You have to do what CES says you can do.

Obviously it is Friday almost a week later since this incidence happened, but that is how long it took for me to mentally be able to write it, you see first I had to deal with it inside myself. You see first I had to process it emotionally before I could actually admit this is my life.

Lost in my life and its hard to find my way forward

Well its been a while since I have written on my blog, and its due to many issues going on right now.

The first is that I am having a new grand baby. I am super excited, but at the same time super angry that I wont be able to be like I was with my first grand baby with this one. This should be one of the most exciting times for me, but I worry. I worry how long will I be able to hold my grand child, I wonder how many days will I have to give up the right to spend time with her, knowing that those days of CES are going to interfere with my life as they do.

The thing is that CES has been ruling my life lately like never before. See after my surgery I had this fear, the fear of going back to a neurologist. It may seem irrational and some people may not understand it, but going to a neurologist is what landed me where I am. Going to a neurologist destroyed who I was. A neurologist became my nemesis in my mind and scared me to death. I had gone to one other neurologist before my surgery who told me one thing, so I went to the new doctor who was represented to me as a neurologist for a second opinion, but I then found out he was actually an orothopedic doctor, which I did not even know till after he had destroyed my life with his surgery and his lies. So yes I had an irrational fear of letting any other neurologist near me.

Well I ended up going back to the original neurologist because the problems with my feet are getting much worse and I even had a situation where my right leg completely stopped working, there for trumping my fear and sending me running to the neuro. He was not at all scary once I was there, and I am hoping with all my heart to trust him. I will be starting some rehab, as he hopes it can help with some of my pain. The loss of function is there and I don't think it will ever go away, but if he can help me to stop it from going further, then that will give me some peace of mind. Going through this though has put me in a very dark place again, and I am having a hard time climbing back up out of it. Most days are painful and I have to take a lot of medications just to cope, but sometimes if you can imagine, which is hard, its even worse. The kind of bad that makes you now want to fight anymore, and its hard. Its hard to try and focus on the positive like my new grand baby that is one the way.

Every time I start to feel happy, my body reminds me I have a lot of reason for not being happy. So I fight on
and hope that the next day will find me in a better place. Today was a very rough day, with an extreme amount of pain, and has again reminded me of my hate. My hate of what was done to me, by someone who only wanted to further their own aspirations, and not have any care at all for what he would do to me or what I would become because of his surgery. I wish I could make him live one day in my life to see what he has created with his lies and negligence. 

Scary night last night

Lately I have been having an extreme amount of pain in my feet, to where they seem to "Claw Up". It feels like the middle of my foot is tightening up and pulling my front part of my foot in, like a bird clawing on to a branch to sit. It is extremely painful.

Well last night I started having really bad pain at the bottom of my spinal cord, shooting down my leg, so I figured maybe if I got up and tried to stretch out it would go away. When I went to stand, it was like I did not even have a right leg, other then the pain that was surging down it. I could not stand and my right leg was totally unresponsive. I tried to go a few feet from the couch but was stuck, I was leaning against the wall screaming in pain, because I could not move. I could not stand on my leg and the pain was immense

Thankfully my husband woke and heard me yelling, and he came to see what was going on. He had to help me to the bathroom, where I could take a bath and hope to calm what ever it was that was going on with my leg. We both looked at my feet and noticed my right foot was red and purple, while my left foot looked totally normal. So while I waited for the bath to fill I took my pain meds and a muscle relaxer. I just sat on the toilet seat and waited hoping the pain would go away.

I finally took a bath, and sat in the hot water for half an hour and thankfully it started to subside. To say the least I need to make an appt. with the neurologist today to see what the heck is going on. I was only a bit worried about the pain in my feet since it was not getting worse, but it seems now it is going past that point. I am wondering if it has to due with more scar tissue forming on the nerves from my surgery. I am very scared at this point, and think I may be getting worse. It seems the damage never stops, it just keeps progressing. It makes me wonder how long will I be mobile before this just completely takes over me. I hate that this surgery has done this to me, and I hate having to live like this.

Continued from Yesterdays post

Once I was home and had seen my surgeon on several occasions, I was constantly being told that it would get better, I just had to be patient as nerves take time to heal. I could only hear these things so many times, where I finally came to the conclusion I was not getting any better. I would need to learn to live a new life.

Not only did I need to learn to live a new life, but so did my family. They had lost the Mother, Grandmother, Wife, Daughter and Sister I had been. I was gone and what was left was this damaged body that I could not learn to live with. I cannot tell you how many times I contemplated just ending it. Thinking that it would be so much easier to just end it for me and my family. I know that is  the cowards way out, but it is so hard at times, and only living it would you understand.

I am very lucky I have a wonderful husband that is there for me. He is the one person that sees it all. He sees when I am curled up in pain and cannot sleep for days on end because it feels like I am being hit with a taser gun over and over. He has walked behind me when my bowels lose control, when myself and the floor, and everything around me is covered in feces. He silently and lovingly just cleans it up and tries to calm my tears and hysterics. I can honestly say that he has seen all of the worst things you can imagine, yet he is still here and for that I am thankful. Even though we have no intimate relationship anymore due to my having no feeling plus the fear of infections, yet he's still here, as he has stuck to his vows like no man I have ever seen. He really meant the part in sickness and in health.

The two people it is most difficult for are my Daughter and my Grand Daughter. Before this surgery I had watched my grand daughter 3 to 4 days a week from around 9 to 5 each one of those days. My daughter sees me and I walk and she does not understand that most of the damage I have suffered is invisible to the naked eye. If you see me, you will look at me and think "Well she looks fine to me" and I think its very hard for my daughter to get past that visual. She does not see me having to stick a straight catheter in my urethra each time to empty my bladder. Or putting on rubber gloves to pull out the feces. She does not see me when my bowels lose control and I am covered in feces, she does not see when I am in so much pain I want to die, she does not see I can only walk so far before I am in severe pain, as I avoid her on these days. These are the things I hide from her. I don't want to burden her with this, because I know how hard it is to live with.

I know it is also hard for my grand daughter She notices that her "Nana" is not around as much, that she does not climb on the jungle gym and go down the slides, she notices I don't run and chase her, she knows all the things I don't do anymore, but shes 3. Shes 3 and most likely she will never remember the Nana that I swore I would be before she was born, the one that took her somewhere special on most days I had her, so she would know the love I have for her. What she sees now is this other Nana, the one that cannot go to the park and run, the one that cannot pick her up for hugs and kisses because of the pain, the one she is lucky to see once every week or two and never by myself, because god forbid if something happens, she would be alone with me. This is who she will know and remember, not the woman who vowed to show her the love and playfulness that she deserved from a 45 year old Nana. She will never know that young woman.