So the last couple days have not been so good. For some reason I have this new pain that is drving me insane. It starts at both hips and the sacral area of the spine, and starts throbbing all the way down both legs. It has been waking me up at around 6am every morning (where as I usually sleep till around 9am), same thing just throbbing and throbbing. I sat in the bath tub for around 2 hours after taking pain meds and muscle relaxers before it calmed down. It has completely exhausted me.
Hubby is making my appt, to start acupuncture, so hopefully that will help. Its getting really old though when you finally think you have a hand on things and then all of the sudden there are new things. Yesterday I had an appt. with a nerve damage rehab specialist, and she says not only does she think I have Cauda Equina Syndrome, but that the nerves at the S1 and S2 level have been damaged directly as well. I am afraid of how far this can go, and how much worse it can get. I just dont know. All I know is that when I have days like this, that is what brings back my depression in full force. Its like the pain just sucks everything out of you till there is nothing left, yet you have to go on because that is what life is about. I am just hoping my insurance will cover the acupuncture, not sure on that one yet. I am so tired of waking up in tears every morning lately from pain, please something make this new pain stop!!!!! I am strong, but how strong do I have to be?
I wish I knew what this new pain is all about. The nerve specialist told me that the foot spasms are directly related to damage to the sacrum nerves and not the cauda equina nerves. So the diagnosis is just getting worse. She was not able to tell me if it will continue to get worse or not, but just basically that is what is happening. I will be scheduling a new MRI also to see if they can see anything that is going on with all this new stuff. Hopefully it is something they can stop from further damage. I would imagine though if there is something they could do, it would involve surgery, which would be my worst fear of all.
On a positive note, my new grand baby is still in mommy's tummy, and if she makes it full term and comes on her due date, well lets just say we will have something new to be thankful for every year :) Her due date is thanksgiving :)
Thursday, August 26, 2010
Sunday, August 22, 2010
For My Daughter who has to live with my CES, I Am Sorry.
Well this post is going to be a bit different. I have sat here thinking about how I affect the people around me, and besides my husband, I think it has affected my my daughter the worst. So this is escpecially too her. In case one day you find my blog, you will know that you have never been out of my thoughts even though I have not been there for you the way I have in the past.
I am sorry I am not the mom you used to know. I know it hurts you when I am not there for you like I used to be before this new life. I want to write this in case you ever find my blog and wonder if I ever think about how it affects you, this crappy thing called CES. You have to know that in my heart with you, it effects me the worse. We all know my husband is able to roll with the punches, because he is made of that kind of stuff, with that steel exterior, even though I know it hurts him inside, I am sure it hurts you and my grand baby even worse, which is something that one cannot even imagine if they have ever seen the look of hurt on my husbands face in my bad times.
I miss seeing you all the time, and doing things with you and the grand baby, like going to disneyland, the aquirium, the zoo and all those other wonderful things we used to do. I hate hearing the disappointment in your voice when I let you down and it breaks my heart. I hate that while you are going through such a rough time right now with your pregnancy, worrying if that little one will stay in there as long as she should, that I cannot help lighten that load for you. I remember when your daughter was born at 26 weeks, and while you were at the hospital I would go to your house almost every day and clean, rearrange, set up furnishings, go shopping for things you needed. I was there 100% no matter what you needed, but this time I know I am not and I am disappointed in myself for not being able to do those things this time. Even though I know its out of my control it still hurts me to hear it in your voice and know that not only has this changed me, but its changed us. I have loved you from the day you came into this world, and everything I have ever done has been or revolved around you and me. We were a pair and now I let you down on a contant basis and I hate that.
I hope one day things will get better because I miss us. I think the times I know I hurt you the worst are the times that I recieve those letters of frustration from you asking me why I cant just move on and be the mom you used to know. I would love nothing more but unfortunately my body does not agree with my mind or my heart.
I do start new rehab with the nerve damage specialist this week and hopefully between her and the neuro I can accomplish some improvement. I dream of getting at least somewhat more mobile to be able to have the fun we used to or at least come close. I wish I could just run with you both like I did before jan 2009. I dream of it and wake up, and that is when I cry, I cry because I love you so much but cannot give you what you need all the time. Shoot lets be honest here, I cannot give you what you wish hardly ever. .
So for you my dear daughter, I want you to know I feel the loss too and I wish I could change it more then anything in this world. Hopefully over time with more rehab I will get more functionality, or at least that is what I wish for. I love you xoxo and never forget that no matter what or who I become, never ever forget that.
I am sorry I am not the mom you used to know. I know it hurts you when I am not there for you like I used to be before this new life. I want to write this in case you ever find my blog and wonder if I ever think about how it affects you, this crappy thing called CES. You have to know that in my heart with you, it effects me the worse. We all know my husband is able to roll with the punches, because he is made of that kind of stuff, with that steel exterior, even though I know it hurts him inside, I am sure it hurts you and my grand baby even worse, which is something that one cannot even imagine if they have ever seen the look of hurt on my husbands face in my bad times.
I miss seeing you all the time, and doing things with you and the grand baby, like going to disneyland, the aquirium, the zoo and all those other wonderful things we used to do. I hate hearing the disappointment in your voice when I let you down and it breaks my heart. I hate that while you are going through such a rough time right now with your pregnancy, worrying if that little one will stay in there as long as she should, that I cannot help lighten that load for you. I remember when your daughter was born at 26 weeks, and while you were at the hospital I would go to your house almost every day and clean, rearrange, set up furnishings, go shopping for things you needed. I was there 100% no matter what you needed, but this time I know I am not and I am disappointed in myself for not being able to do those things this time. Even though I know its out of my control it still hurts me to hear it in your voice and know that not only has this changed me, but its changed us. I have loved you from the day you came into this world, and everything I have ever done has been or revolved around you and me. We were a pair and now I let you down on a contant basis and I hate that.
I hope one day things will get better because I miss us. I think the times I know I hurt you the worst are the times that I recieve those letters of frustration from you asking me why I cant just move on and be the mom you used to know. I would love nothing more but unfortunately my body does not agree with my mind or my heart.
I do start new rehab with the nerve damage specialist this week and hopefully between her and the neuro I can accomplish some improvement. I dream of getting at least somewhat more mobile to be able to have the fun we used to or at least come close. I wish I could just run with you both like I did before jan 2009. I dream of it and wake up, and that is when I cry, I cry because I love you so much but cannot give you what you need all the time. Shoot lets be honest here, I cannot give you what you wish hardly ever. .
So for you my dear daughter, I want you to know I feel the loss too and I wish I could change it more then anything in this world. Hopefully over time with more rehab I will get more functionality, or at least that is what I wish for. I love you xoxo and never forget that no matter what or who I become, never ever forget that.
Saturday, August 21, 2010
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
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
Tuesday, August 17, 2010
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
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
Sunday, August 15, 2010
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.
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.
Saturday, August 14, 2010
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.
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.
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